ROUGH EDITED COPY

EDHI
Malpensa ‑ 11:15 am CST Breakout Session
March 4, 2019

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Presenters: Kristen Cortese, Nicole Pain, Kathleen Colella, Kimberly Holden 
    
   >> Good morning, everyone. All right. We are here this morning to talk about our topic of early hearing detection and intervention in the in‑patient setting. The four of us are pediatric audiologists, and my name is Nicole Pain.  In the interest of not passing the microphone, I will introduce everyone as well. This is Kristen Cortese, Kathleen Colella, and Kimberly Holden. We have three main objectives that we want to cover today. The first is to review our in‑patient data at our facility. This is data that we report to the state of Illinois from 2018. We also want to talk about meeting this EDHI guideline for the complex and critically ill infants. As we know, a lot of these patients are very critically ill, and it's challenging to meet that 1‑3‑6 guideline that we want to strive to uphold. And we just want to talk about the barriers to achieving those guidelines. And then we also want to talk about our in‑patient audiology team attempts to uphold the EDHI guidelines and overcome the barriers. 
    A little overview of our hospital. We do have six locations all throughout the Chicagoland area, but our primary location is downtown location. That is our only in‑patient facility. We have 108 combined beds between our NICU and our CCU. We are a level III unit. Many of our patients have prolonged in‑patient stays. We obviously see some patients there who are only there for days or weeks, but occasionally our patients are there for a longer term. We are not a birthing facility. We are not seeing children for their hearing screenings in well baby nurseries. We are only completing screenings for the more critically ill or critically complex team. 
    We do have five on‑call audiologists and a non‑clinical coordinator of audiology services. So, the six of us, we rotate daily to help triage in‑patient orders in the priority of completing in‑patient testing, but we do help manage the flow of our clinic. So, it is a dual role. We have in‑patient testers, so those are audiologists who have time to complete the diagnostic evaluations. But we also have assistants who can assist us with completing screenings. So, obviously the audiologists are doing the diagnostic tests and we have staff to help us with more of the screenings. 
    We have two audiologists that attend multidisciplinary rounds. They are put on by the NICU and CCU. They include providers from all specialties, occupational therapists, speech therapists, attendings, respiratory therapists. They all get together to talk about the developmental care of the patient. It's important that these patients receive medical life‑saving care, but we are also concerned about their development once they leave the hospital, and the main purpose of the rounds is to address those needs. 
    
   >> Thank you, Nikki. The bulk of our role is with infants, which is where EDHI comes into play. We know the joint committee on infant hearing outlines the 1‑3‑6. 
    Looking at nationwide data from the CDC, this is data from 2016. About 95% of infants nationwide do receive that screening by the one month of age mark. The referral rate across the United States is approximately 2%. And among those 2% of infants that refer on a newborn hearing screening, about 10% will go on to receive a diagnosis of hearing loss. To circle back to our facility, this is all data that as we report it to the state of Illinois. In 2018, we preformed 327 automated ABR screenings, these are typically infants who did not receive screening before before transferred to our hospital. Our referral rate is higher than the national average, but we are looking at a very high‑risk population. Sometimes our screening circumstances and environment are less than ideal. So, you know, we have a referral rate of about 15%. We have a lot of infants in our critical care units that have possible stays of several months. For that reason, we are trying to get beyond that stage of EDHI time line and move on to diagnostic testing. This is a break down of the in‑patient diagnostic data. Of those 71 ears that referred, half did conform to normal hearing. The bulk of hearing loss that we did confirm was conductive. These could be transient middle ear hearing losses. About 10% did receive a diagnosis of sensorineural hearing loss. 
    I'll address the 12% that are undetermined. They did not receive a confirmed diagnosis before discharge and are now being followed as an out patient. 
   >> Thank you, Kim. Next we will discuss any typical barriers for following EDHI guidelines. We were not trying to make any political statements with the picture of the wall being built here. But barriers that exist at one month typically carry over for diagnosis at 3 months and the intervention at 6 months. So, first there's medical barriers.  So because this is such a fragile population, sometimes their medical status prevents us from being able to do a screening at the time. Sometimes they have positioning restrictions, so we're unable to get access to one or both ears or they have very strict movement restrictions so we're unable to screen them for that as well. 
    And then testing barriers. Doing testing in the NICU, there's a lot of ambient noise and electrical interference. As anyone who does testing nose that inadequate sleep state and high myogenic noise is always an issue. And finally communication barriers. Sometimes we don't receive an order in a very timely fashion. We have difficulty contacting the medical team or the bedside nurse or the infant gets discharged before we are able to complete the screen. But you know, when we discuss these communication barriers, and we'll continue to do that, we, you know, we on our team also accept accountability that communication is a two‑way street and there are times when we drop the ball and with having such a large team, we don't communicate or pass the information along effectively enough as well. 
    So barriers to achieving 3. Again, we have the medical status in play, and sometimes we have middle ear status. If we have abnormal diagnostic conductive hearing loss, it will take some time to figure out the EOT involvement. Time and staffing constraint, diagnostic ABRs are very time‑consuming evaluations and take longer on the in‑patient side just to travel to the room takes time. NICU is on 14 and CCU is on 22. It takes time to set up. 
    And finally communication barriers. For obtaining otologic intervention, it takes time to figure out if someone is available and if an ear exam is possible at this point in time. If we determine that the best way to get the information we need is an AVR under general anesthesia, it takes time to coordinate with other procedures, so this child is only undergoing general anesthesia once versus multiple times. We're told by the medical team that no, this person being under anesthesia for an extended period of time is not possible. So, we're back to trying to complete these under natural sleep state. Sometimes it is just getting little pieces at a time as much as the infant will sleep for us. 
    And then barriers to achieving 6. So, when a hearing loss is identified and the family decides to pursue amplification, it takes time to coordinate a fitting. There's a lot of other providers that are working with this child. We have to figure out do we have appropriate loaner devices that we can give this child? What's the funding going to be for their devices, thinking long‑term? These are small ears, so there's retention issues. We have a lot of feedback issues. Because these are patients that are ill and can't leave the floor, at this time we're not able to do testing in the booth or real ear verification. You have to bring it back up to work with them. And then education barriers. So, for parents, we're, you know, sometimes parents have restrictions that don't allow them to be at the hospital a lot. So, it's hard to find time to give them the education that they need when they're already getting bombarded by a lot of other information to care for their child. And we're also trying to educate the medical team. There's a lot of providers seeing them, a lot of nursing staff changes. So when the parents aren't there to put the hearing aids in, we're trying to work with several other staff members to get it in, or maybe other family members caring for this child. 
    And then family barriers. These are things anyone who works with families, you know, encounters. We have trouble accepting the diagnosis. It's another diagnosis for a lot of these families. We can have language and cultural barriers. And then finally we have this idea that, you know, big picture care. And this is going to be a motif through the rest of the presentation. And so, you know, we have all this ‑‑ all these priorities for 1‑3‑6. We're all here at this conference together. But when you think of them with the parents or the care givers and the families and what they're going through, they have a thousand other concerns and priorities that they're thinking about. And that's why, you know, on this sheet, these are just some of these circles are just some of the concerns that they may have. And to the right in a small bubble is what's EDHI? What's going on with my child's hearing, if they're even thinking about that. How do we find a middle ground for the big picture care? 
   >> Thank you, Katie. All right. So, we're going to move on now to how we can break down those barriers. So, we have identified five key areas that can help break down the wall or create a door in the wall. So, the first area is creating ideal test environments. This has to do with the meeting the 1 and 3 milestone. In order to do that, we tried to ensure that we are using pacifiers and or sweeties for the patients in order to soothe the baby at the bedside as well as ‑‑ I think I'm going to move a little closer. I'm coming by you, Katie. Okay. 
    As well as ensuring we have a tight swaddle, and we have access to different supplies such as the Mamaroo or swing. And in terms of eliminating the myogenic or ambient noise, we turn down the lights, close the door, and make sure we don't have anything else that could interfere with testing. We have resources that we are blessed to be able to come upstairs, or if we need multiple pieces of equipment at once, if we need things to help position or maneuver the baby. And we coordinate it with parents at the bedside, if that is how the baby is going to be most relaxed. 
    So moving on to using time wisely. And I put this mug on there, because I get a kick out of these. And that is certainly how we feel working both out patient and in patient settings. We feel like sometimes we need to be in two places at once. So in order to do that, we need to be flexible. And we need to use the down time between our out patients. So, some of us have dedicated time in our schedules, and sometimes there could be something going on in the NICU with the baby being discharged that day and we didn't know they were going home, and maybe the medical team didn't know either. Then that patient becomes a priority for us to go upstairs and get it done right away. So, it takes a lot of fast changing up your schedule, fast moving, as Katie said. Because it's not a quick trip to the NICU and back. 
    And with limited time, we need to obtain the most clinically useful information. If the patient has middle ear involvement, we may need to start there and see if this is affecting the hearing. Maybe we'll get a quick response to bone conduction. Maybe we are not able to test 5 through 4,000 hertz. Maybe we get a quick stimuli and get the bone conduction so we can talk to the parents about the type and degree of hearing loss. 
    Next, moving on to communication, we want to make sure that we're communicating in the same language as our patients.  So that's scheduling interpreters in order to be able to give that news about what we're seeing for that 1 in 3. Whether we're doing a screen, what the screening results are. We provide information on that in the patient's language. And if we are making a diagnosis of hearing loss, we want to be able to counsel and talk to the family so that they can fully understand, because hearing loss, as we all know, is not something you can see. So, we need to make sure we're explaining it so that the parents can understand. And we also have some new identification brochures and information, so that we are able to not only give parents news and leave them, but also provide information that they can look over after discussing with us, because as we know with working with parents and families, sometimes the retention when getting new news isn't as much as we would expect. So, then after the fact, there is something to refer to if the family has questions. 
    
    So we call upstairs on the babies and ask the nurses how is this baby doing? When is the best time the baby sleeps? Is the baby going home soon? Could we try today? And that's when we make sure it's appropriate medically to try on that parent. As Nikki addressed, we are working with complex patients. The patient may have had a procedure or been irratable all day. And sometimes we get the please don't touch the baby, and we're like absolutely not. We will leave them be. And participate in the NICU and CCU rounds and care conflicts. This allows us to see where the patient is in their medical process within the process and also the rehab process. We're addressing that, and giving the update to the medical time, where we are on the 1‑3‑6EDHI time line. 
    Next we want to coordinate services. We spoke about how middle ear involvement does impact our ability to diagnose. So, we need to make the ear nose and throat department aware of that. Maybe they have an upcoming procedure that they are going to undergo, so we need to make sure they know that there is congestion that we see on the tempanotatry. We want to make sure there's the opportunity to coordinate a sedated AVR so we're getting everything done and taken care of for the patient at once. 
    We want to work with care coordinators to ensure outpatient follow‑up. We don't just let the patients leave the hospital and don't follow‑up or check in with them. Our medical team is very much concerned regarding outpatient appointments.  So before these patients leave the hospital, we ensure that we have audiology follow‑ups scheduled on the books for them, whether it's just routine follow‑up at six or eight months of age and maybe follow‑up for a hearing aid fitting 
    And last is establishing relationships and providing education. So, we want to make sure that the other medical specialties at the hospital, since we are working with the medically complex patients understand our services. In terms of big picture care, this may not be on the forefront of the parents' minds or the medical team's mind, but we want to make sure that they understand the reasons that we are ‑‑ need to intervene in terms of the EDHI time line. We want to provide parents with proper educational materials and support. After a diagnosis, we want to ensure that they have some supports. We have some social workers throughout our department. 
    Finally you want to push improvement projects in order to have nursing staff comfortable with hearing aid use so that can be implemented on a daily basis. 
   >> All right. So, we wanted to put this information into the context of a couple of case studies, and I'm going to fly through the first one. We would like to focus more on the second one.  The first is basically where the stars aligned and even with a very medically complex infant we were able to meet the milestones. This baby was born at 37 weeks with multiple cardiac abnormalities, chromosomal abnormalities. Despite the medical context, we were still able to complete a screening by 1 month of age. We completed it at 3 weeks old, we moved quickly and efficiently to a diagnosis. There was middle ear involvement that we had to wait out. We checked at four weeks later and then three months. At three months, they were normal, and we did confirm a severe to profound sensory hearing loss in both ears. We were able to quickly, per the parent's choice, move forward with binaural amplification by 6 months of age. So, you know, there were some barriers that we did face with the middle ear involvement and the medical complexity of the patient. But we were still able to overcome those. We had great communication with our ENT department. The family was really receptive to the information that we were giving them, and we were able to move quickly through that 1‑3‑6 process. 
   >> So with our remaining time, we want to quickly go through a case where it wasn't as simple or easy to complete the 1‑3‑6 guidelines. Just some information about her medical history. She has extreme prematurity. She was transferred at 4 months' gestation age. I am not going to read through her medical history. So, just to go through our history. So if we're looking at it in a gestational context, we have blown past 1 and 3 and 6, but we go back to the big picture care. She was a very critically ill infant at the time of admission, and the medical team didn't feel it was appropriate for us to intervene or come into the room where the family was trying to deal with other things at the time. We were able, within the six month period to create a diagnostic AVR. The wherein we did that, there was a family history of hearing loss. Mom wore bilateral hearing aids and diagnosed with a sensorineural hearing loss. They believe it was congenital. At six months, we were able to confirm the hearing loss. We were not able to say the exact nature of cause. So, you see then between the 6 and 10 month age, there is a huge gap. We're going to address it on the next slide quickly because we're running out of time exactly why that happened. For those of you who maybe can't see the slides, we did repeat diagnostic testing bedside at 10 months of age and 11 months of age we were able to confirm the diagnosis, and then able to fit her with amplification based on parent choice and our recommendations. 
    What were her barriers? The number one thing was her medical stability. She remained critically throughout her entire in‑patient state. And there were times when we were not able to go in and do any testing or intervention at medical team request or our discretion or family's request. Additionally, like I said, sometimes bedside testing does leave to poor wave form morphology. We knew we were identifying a hearing loss, but sometimes we can't get all the information we're really hoping for, so we do have to advocate for our patients to have further diagnostic testing. That is what happens in this patient's case. And the family, very understandably, were hesitant to have their child undergo general anesthesia, and not just for our testing. We will never do that when they're in in‑patient, but we did recommend it in conjunction with other procedures. So, that's where that big gap happened between 6 and 10 months of age. And finally resource barriers.  So we talked about it many times, somebody's funding can be challenging, and it relies on our hospital to have a sufficient loaner hearing aid supply. Thankfully for this patient we were able to have that, but if we hadn't, it would have also delayed the process for her. And also, she did lose a hearing aid. Nursing staff took it out, placed it on the bedding, and the bedding was taken to laundry and there went the hearing aid.  So we had to have the discussion about not misplacing the quite expensive devices. 
    But a positive update. She is now 18 months of age. She has remained in‑patient her entire life. She wears hearing aids five hours a day, which doesn't sound like a lot, but for a patient who spends much of her day under sedation medicine, that is a lot. And actually, she loves her hearing aids. It's all over her chart. If I'm fussy, are my hearing aids in? They're not? Put them in. She loves them and they make her so happy. So, just some quick take‑home messages. We're going to pass the mic around, because we're corny like that. 
   >> So there's still a place for EDHI in the in‑patient world despite all the barriers that are there. It's worth it. 
   >> We can and should follow‑up with the in‑patients. Yeah. 
   >> So in terms of breaking down barriers, don't let them get in your way. Don't give up. 
   >> And finally, big picture care, big picture care, big picture care. We understand that the population we're seeing, they are medically complex and critically ill, and it is challenging for us to ask this family to impose on their room. But we also understand the importance of developing language and determining if there is a hearing loss. So, we want to be mindful of having a place in this patient's hierarchy of needs, and be aware that we have a message, and we are a key part of the patient's overall development. 
   >> Thank you very much. Any questions? 
   >> So one of the questions that I have, I'm fortunate enough to be from Chicago, although my child did not get to go to your hospital because of insurance. But I was excited about this panel in hopes that you guys can start changing. We transferred to Christ, which was a bigger NICU. And we definitely fell through the cracks. There should be, in my opinion, something to the NICU nurses that I don't know how you guys can corroborate that says this parent or child meets the factors: Low birth weight, prematurity, jaundice, blood transfusion. Never did I hear one through six. Never did I hear come back when you're not crying over being in the NICU. We missed everything for my son, and he wasn't diagnosed until he was 2 years old. Why is there not something that says ‑‑ I get it. If you get the baby, you can go through that the 1‑3‑6. But if you are a parent and you only meet 99% of the criteria for hearing loss, no one sends a note or a call or a smoke signal that would have led us back to audiology. 
   >> I think the answer is two‑fold. I think it's hard, right, because we don't have control over the patients who are getting transferred to our facility. So, in an ideal world, we would have the critical ill infants and be able to advocate for them. We do, for our patients who pass the screenings, we have based off of JCIH risk factors, guidelines for monitoring and follow‑up, and we base it off of the risk factors. But one thing is just advocacy. It's not that unique. My son had all of these things, maybe just missing one or two of them is what you said. We would love to perform more advocacy. It's not new, right? We've been doing this for a while. But we are trying to ensure that we're not having loss to follow‑up. But I think as we continue to get a handle on this, we would love to continue to advocate for the community around us and also have people like you advocate for us as well to make sure that these guidelines are being met and followed up. 
   >> Do you have any strategies for getting providers to place the order for a hearing screen? 
   >> So I reached out, because I'm the audiologist and Nikki as well, we attend the CCU rounds. That is an ongoing challenge. My advice is try to find ‑‑ try to establish relationships with people from all different specialties. You know, try to find stakeholders to help them understand the importance of what we're doing. Because today in EMR, you know, you can have order sets that automatically will submit a referral, you know, based on the child's age or certain risk factors. We are still working on that in our hospital, but the great thing about us attending CCU rounds and our colleague who does NICU rounds is we are catching those babies who are missed, who don't get the referrals sent or who have a risk factor. We work with an amazing attending who gets audiology and rehab services in general. She says if we're putting all of this work into saving their life and getting them out the door, what is it worth if they're not going to be able to talk and play and go to the park. And the big picture care, trying to teach that big picture care. Because you are going to work with a lot of providers who are just constantly in this very acute environment. And it's hard for them. So, that's where we come in to help with that education. 
   >> So we're out of time. We're getting kicked out. We're more than happy to stand in the hallway after if anyone has any follow‑up questions they would like to address outside of this space. Thank you, guys. 
   [ Applause ]