ROUGH EDITED COPY

EDHI
Malpensa ‑ 11:45 am CST Breakout Session
March 4, 2019

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   >> CAITLIN SAPP: All right. It's 11:50, and I'm going to get started because I have so much to tell you. I thought this was 30 minutes and not 25. Thank you so much for being here today. I'm from the university of Iowa, and the topic I'm going to be presenting on really fits nicely with the presentation you just heard about the NICU. I have no relevant disclosure financial or personal to make. A little bit about me. I'm a pediatric audiologist, and this last presentation was so much fun to watch, because when I was fully clinical, I was in a children's hospital in this same environment, trucking my cart up to the NICU and waiting, and if we wait, the baby's going to fall asleep. Just wait. I know it. And hearing a little bit about their strategy took me back. 
    I'm currently a clinical supervisor and a PhD student at the university of Iowa. I'm in the lab with Dr. Elizabeth walker. I have been really involved my whole clinical career in the early hearing detection intervention program. I didn't realize some of the slides would be covered up. I served on the Texas leadership council for ages birth to 3, and I'm on the EHDI board in Iowa. 
    I want you to know one big essential finding. We're going to talk a little bit about why is it interesting to look at NICU babies, and finally recognize the possibilities of partnering with your state EHDI program. 
    So to start with a little bit of background about the outcomes of children with hearing loss study. This will be the data set where I'm looking at pilot data from. The outcomes of children with hearing loss study is a longitudinal research study that spans 16 states for ten years. University of Iowa, UNC in North Carolina, and boys town national research hospital in Nebraska. 
    The first five years were funded under an NIH grant and first looking at kids from age 6 months or 5 years. That was called just the straight up OOCHL. We followed the same kids as they moved into the school aged years. We all know, as you grow, your communication needs grow. The same concerns that we have about kids at age 1 might be different than a kiddo at age 7. Family concerns are going to be different. The big questions from families are going to be different. And that's the next age of this longitudinal project. He changed my ‑‑ something happened. I'll have to use the clicker. 
    Okay. Next slide you would see a big map, and you will see these are the kids that see Iowa, these are the kids at boys town, and then UNC. And then I joke about putting them in college colors. We have tar heel blue, and gold for black and gold. And the corn Huskers will be red. It's not clicking forward any more. 
   >> Try this. 
   >> CAITLIN SAPP: Okay. 
   >> Oh!

   >> CAITLIN SAPP: Oh no!
   >> Yeah. It's saying everything we're saying, though. 
   >> CAPTIONER: Hi! I can hear everything so, I type it. 
   >> I see it. 
   >> CAITLIN SAPP: I have my slides memorized. I will talk about what guides our program. We know this is the advent of universal newborn screening. We have a generation of kids who are hard of hearing but look distinctly different from kids a generation ago. A lot of research is directed towards kids who are severe to profound. Those kids do really well. They are moving forward with full‑time ASL use or kind of they have been well studied with kids who have cochlear implants.  The goal is to look at the ‑‑ 
    [ Off microphone... ] 
    Kids who are likely wearing hearing aids. 
   >> I think it went forward. Okay. 
   >> CAITLIN SAPP: This is kind of where I am now. 
   >> Okay. Let me see if I can load this back up. There we go. Now I got to shrink this. Hang on. We're getting there. 
   >> CAITLIN SAPP: Do we see that the current intervention the kids are getting, is it meeting their needs? How are they performing in the environment? Things like a noisey environment? The spaces where we expect them to have the most challenge and that we're most invested in them unlocking success. 
   >> Okay. Finally. Sorry! There's a lot going on here. I got the last one to work. 
   >> CAITLIN SAPP: They have already heard that talk. 
   >> How was it? Was it good? Let me see if I can get rid of this guy. This was the last one, right? You should be underneath here. I'm not going to save it. Save it. Save it. Go. Oh boy. Okay. Is that ‑‑ 
   >> CAITLIN SAPP: That's me. 
   >> Those are yours? Thank God. Just think, I've got four more rooms to do after this! 
   >> CAITLIN SAPP: So for kids who are school age, we see them after school age, so we know they have had the same amount of educational experience, and we're collecting a huge amount of data. These are four‑hour long appointments. We are using speech and language testing. We're collecting information about their hearing aids. How well do they fit? How many hours a day are you wearing them? Working memory, and then finding out information about the situations where they're listing all the time. So, even going into their classrooms and measuring, what is the noise level at your care? Some of the data will come back to OOCH, and we're looking at a comprehensive parent intake form. How old? At what age? Do you feel like you got enough? Really having parent's perspective and parent‑provided information. 
    I'm going to talk about one essential finding that pairing well with what I'm looking at specifically. You can't see this, but I'm going to skip through these. Today we're looking at the paper which looks at the title, babies who don't pass the newborn hearing screening. For this first paper, we really just narrowed in on 193 kids who were identified on newborn hearing screening. So, the congenital subset. Looking at what family and child factors affect whether or not parents follow up. How consistently describing the entire data set are children hitting the benchmarks, and when we see kids struggle, what are the parents saying are the this was sort of done using linear modeling, and we considered several predictors that you have seen in the literature saying this was associated with follow‑up. This presents challenges for families. Looking at sex of the child. Test site. Were kids at UNC consistently getting in earlier than kids in Iowa? Socio‑economic status. Family income and paternal education. We had the most data for maternal education. Since it was closely related, you will see that ma tern education. Did we think that as you might intuitively think that the kids who have the most hearing loss a lot more motivated to follow up. And actually, big picture, when you looks at who follows up, we see only this as a strong predictor. Across the X axis, you're seeing the benchmark. Age at confirmation, age at intervention, and age at hearing aid fitting. For every benchmark there appeared to be a factor of high maternal education. Can we more closely target intervention? Target really supportive family follow‑up knowing the families who may have the highest amount of challenge getting in and meeting the benchmarks. We see for age of confirmation, in the highest education level, there's a certain percentage of families who are getting in. Looking at it here, this is all educational groups collapsed. What's happening with the remainder. We see that 65% are having hearing loss confirmed by three months. What are the parents telling us in the other 35%? 
    When we observed delay between screening and diagnostic assessment. We had multiple people saying we screened and screened and screened. You know, they were screened seven times. Screened twice at the hospital. We went back one more time, sent back and I didn't pass and then screen again. Multiple re‑screenings got in the way. Difficulty getting an appointment. And then other. A lot of families didn't see anything that they felt like described their system. When we talk about hearing aid fitting, the same factors. Some families decided not to proceed right a way or they were not initially recommended. These were established to be hearing aid candidates later. Difficulty obtaining appointments. And then other. I'm struck by this when I think about how many of these big picture factors that families identified as challenges are systemic things that really consistent use of something like the JCIH. I appreciated the prior audiologists focusing on it. If we are applying the benchmarks universally, it could have prevented some of the big challenges. And I'm going to talk about my current research on NICU babies. 
    You know, you guys are all here, so I don't need to ask the big question. I think there are others when I gave this talk like why is it important to study NICU babies separate from other babies. We know that babies in the NICU represent the highest level of risk for sensorineural hearing loss and auditory neuropathy disorder. They really can multiply in a NICU environment. You can measure the increase in NICU use. Perhaps in a different conference they would think about it from a population standpoint. Does that reveal overuse? You see regional variation. If you have a lot of NICUs, your baby is more likely to go to one.  In terms of our follow‑up, if a baby is in a NICU, we need to be planning our best practices. And finally, improved survival is present for the earliest babies we see every year. Babies who are earlier babies who are sicker continue to move forward and sort of have really positive outcomes. But that can mean a really lengthy admission to the NICU as they learn to eat, breathe, drink, and grow. They need to be there learning to eat and learning to grow. 
    My questions come down to when are they getting the newborn hearing screening? Are there specific recommendations needed for the care teams that treat the babies? 
    So here are my two primary research questions. Do infants with lengthy NICU stays experience delays? And how can we characterize the timing? When are we hitting those dates? We have this big OOCL data set? Can we use it to answer the questions? So I cut the data, the kiddos with hearing loss into two groups. The NICU group is kids who were in the NICU more than five days. The non‑NICU group is everyone else. We thought that if we're most concerned about NICU and timing for the 1‑3‑6, you were there less than five days. You likely have the fewest risk factors and likely didn't face timing challenges. All the way down to normal birth weights of 2500 grams. This is the number of days those babies are in the NICU. I put the red lines in to show you, this is when we would expect you to be hitting the EHDI benchmarks. If we look at confirmation of hearing loss. For the tiny babies, some of them have 100 days left in the NICU. We're thinking about are you going to meet your confirmation AVR, and maybe you haven't even have your screening yet. You're looking at these babies' gestational age by birth weight. This is a descriptive slide.  In the yellow is the NICU group; in the black is the non‑NICU group. You see that they are earlier. I put this here because I think it tells a good story. The inclusion criteria is that hearing loss is really your only disability. We enroll kids who are otherwise typically developing or have normal age adjusted cognitive status. These are an indistinguishable group of 12 years, but if you think back to where they started, we have really early and tiny babies in our sample. This is all retro, saying that these kids went on to be healthy typically developing kiddos who maybe wear hearing aids. Everyone to the left of the line was considered pre‑term, and everyone under that was considered low birth weight. 
    So we want to remind you about 1‑3‑6, screen, diagnose, enroll in intervention and in contact with technology where appropriate by 6 months. Right off the bat, using the data set, we don't have access to the date of their first screening. That threw the first wrench in. Additionally, we're going to measure something called turn‑around. I think of it as the fourth EHDI benchmark. Our goal is that hearing aids are fit within one month of confirmation of hearing loss. We do have access to make this measurement in both the NICU and non‑NICU groups. Here are those ‑‑ the titles are cut off by the CART, but you're looking at age at confirmation, age at fitting, and age of early intervention. So, the red line cutting across the box classes showing you if they had met the benchmark, they would have been below that line. You can see for the middle part of the data, the middle 50% of the data, lots of kids in both groups are meeting the benchmark, but there's an enormous amount of variability. So, falling significantly out of when we would have predicted. But the outliers are present in both groups. You know, the data was so skewed for this turnaround, the fourth EHDI benchmark, that I couldn't even really describe it for you. You are looking at the distribution of when they got the hearing aids after confirmation. Think of each shape as representing 100% of that group. I'll give you a red line showing when the benchmark was. The good news is you see a peak, and you see it in both groups right around when want them hitting the focus. Some kids are 15 months out, 20 months out from confirmation of their hearing loss. This is not from the day they didn't pass their screening. This is the day we knew they were a candidate. You get the impression that it looks like they got around to getting hearing aids in both groups. So, you can't say that was a NICU sort of attribute or non‑NICU attribute. Boy, seems like lots of kids in both groups are kind of taking a long time. Could we see a break down of what percentage did meet the EHDI benchmarks? Yes, I will tell you, you can. So, looking across the same benchmarks, yellow, the NICU group, a third of them met the confirmation for hearing aid fitting. And then for turn‑around, almost 50% met the benchmark. I can tell you there weren't significant differences between any of the groups, the NICU and non‑NICU group performed the same. You saw the trend for the primary benchmarks. And now you see the early intervention. You see within our sample, it seems like the NICU group had an advantage. We didn't measure that was significant, but this was significant with what other researchers have found, which tells us maybe babies are being referred for other reasons, and we would expect that NICU group to have the most additional medical needs, which may have warranted a referral. Limitations? There are several. The more we thought about it, the more limitations we thought about using the data to answer these questions. 
    We only had children with hearing loss. A good EHDI system serves all of the children of your state, including the kids who have normal hearing but need a diagnostic testing. Our sample won't reflect that. We only had families who chose listening and spoken language. Kids who are identified deaf and move forward with ASL are also in the EHDI system. We don't include children with developmental disabilities. Our sample was English‑speaking only. At this point, some of our data is ten years old. If you have been enrolled for ten years, we have had your screening at least ten years ago. And finally, we didn't have that date. We didn't say how many days old were you when you got that screening? For this question set, that's an especially important benchmark. So, future research. We have identified this big need to characterize these NICU babies. And at this point, we're going to take an alternative approach. We're partnering with the Iowa department of public health. We have our EHDI state director who has been very interested in answering these questions using the Iowa dataset. 
    This is an example of administrative data. So, I have all maybe the Medicare billing data. Can I say on what age on average are people first being diagnosed with high blood pressure? And then there are times that EMHR can be used to answer, and that would fall under the category of administrative data. There are big limitations, advantages, Big Data sets. They are readily available if you have the right applications, but big draw backs, including you have to take the data how it is. There is no filling in questions you would have asked if you would be collecting this prospectively. So, we intend ‑‑ I wish I could see what that slide said. Like many other states, Iowa partners with OZ to develop an MIS system, a data management system for the newborn hearing screening. Given the flexibility of their software, we're able to go on the backside and collect reports. Over the last year, 2017 data is now completed being compiled and analyzed. So, we can ask those same questions using a de‑identified data set. And it's a partnership we're excited about. It's not the first time we have partnered for big EHDI‑based research. This paper made a big splash looking at what are the odds associated when looking at a very large data set. Iowa has about 39,000 births per year. It's about 2,000 babies a year who need follow‑up. Data is complete for the past four years. So, working from 2014, 2015, 2016, 2017. There will be 2018 data we may add later. Can we characterize what is a typical trajectory of the nature? 
    I'm going to go one minute back to goals. Be aware of why NICU babies may be a special population to be concerned with in terms of your EHDI planning and your ability to move the needle within your state or system or hospital or educational system. And recognize the possibilities of asking big questions and working in conjunction with your state EHDI network. 
    We have a ton of data we have generated, spawning more than 40 publications in peer‑reviewed journals. We have done hundreds of presentations about children who use hearing aids and the outcomes we're seeing and the support they need. You are always welcome to order our info graphics. We will send you posters. Some are geared towards parents and audiologists and early interventionists. We want to bring the positivity, the positive ways to bring information to families and have a shared sense of urgency. 
    We will post the info graphics. The new research is available. And I want to say thank you. I really enjoyed talking to you. It's a topic I am so excited about. I don't know if we have time for questions. If anyone has any. Thank you. Yeah. 
    I guess I need to repeat the question. I think we go to lunch after this. So, maybe it's okay to ask one question. 
   >> So the first question is, are NICU babies automatically referred to early intervention. 
   >> CAITLIN SAPP: Are NICU babies automatically referred to early intervention? My understanding is no. You need a reason or categorization for which you would qualify for early intervention. Many NICU babies have that. Sometimes we would see kids referred to EI for swallowing intervention. For PT. Kids who had other physical needs coming out of the NICU. I did encounter quite a bit that I would have families connected. Then the challenge becomes how do I make your family aware of the listening and hearing needs? 
   >> [ Off mic ]. 
   >> CAITLIN SAPP: So we had limited data. So, the question was, could we see if the kids were referred to EI for hearing loss or for another reason? Sometimes we could. Some families filled that out and some families didn't. It was a lower question on the big hour and a half long intake. I would say across the three sites, that data was spotty. There were many who reported being referred for something different. I think if I am going to be looking at this with state hearing screening data, it may be a case where I could partner with current EI to ask that question. You might need a different strategy to leverage for kids who are already enrolled for a physical need versus kids with a direct referral for hearing. 
    Thank you so much. Enjoy the rest of the conference 
   [ Applause ]   . 
   >> If you have evaluations, please feel free to leave them on the table. I will gather those up.