REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Partnership Between Parents, Academic Medicine, 
And EHDI Improves The Care Of Children At Risk 
Of Becoming Deaf Or Hard Of Hearing"
Room:  Vienna
Monday, March 4, 2019
2:50 ‑ 3:15 p.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings.

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>> Hello, everybody, my name is Allison, I am your room monitor, so I wanted to make sure that you do fill out the evaluations at the end of the session, they're in the corner of the room.
This is your presentation called partnership between parents, academic medicine, and EHDI improves the care of children at risk of becoming deaf and hard of hearing.
Thank you.  
>> Thank you.  Hi, I'm Cathy Lester, I'm the EHDI coordinator in Kentucky.  My colleagues up here is Liza Creel at the Louisville School of Information sciences.  I got that right, didn't I?  
>> You did. 
>> CATHY LESTER:  And that's a big long name and Dr. Judy Theriot and our EHDI chapter champion and we're so fortunate.
We at the Kentucky EHDI program undertook a project over a year ago, and this has been a long time coming to fruition in working with risk factors and how to educate physicians around those, and so part of what we did as part of that is to look at EHDI as a program and then kind of reviewing that in this presentation, you know this.
[Please standby]. 
>> CATHY LESTER:  We're going to zoom through to see what we're working with and look at the risk factor protocol.
Obviously in Kentucky and as in most states, we have these following roles and responsibilities for the EHDI program, just monitoring the refers and the risk factors and monitoring the hospital screening programs.
Kentucky doesn't have any free‑standing birthing center and any screening that happens is typically in the hospital, monitoring our 1‑3‑6 goals and following children with permanent childhood hearing loss until they're enrolled in early intervention.
In Kentucky, EHDI started in 2001.  Before that, we were screening only the babies that were deemed at high risk, which was about 50% of those babies.
This is 92% and that is including our home births and medical considerations and children that died.  That actually is not correct, it is 98%, I didn't know why I didn't catch that before, but my apologies.
In 2001, we started sending letters to families when children didn't pass and that was really the only outreach we made.
In 2009, we started collecting data from audiologists electronically into our same data system that hospitals put the risk factors and refers into, so we had it as sort of a joint data system.
Beginning in 2015, we really started really focuses more on outreach and we started sending letters to physicians around newborn hearing screening referrals and also any infant identified from their practice that had a hearing loss.
This took us, I kid you not, like, eight years to get permission just from my agency from state government, because there were concerns about HIPAA.
My agency is a direct practice agency, as well as kind of a public health umbrella agency, so they're operating as practitioners under HIPAA as opposed to public health under HIPAA and it took us a long time to resolve that barrier.
Then again in 2018 we increased our outreach and sent out letters and we recognized that kids with risk factors never see audiologists and those risk factors need to be managed in the Medical Home.
So, most of you guys know this, permanent childhood hearing loss is the most common birth defect and this chart I know appears in 90% in the conference, but you can see the ratio basically of hearing loss to some of the other common congenital birth defects.
Why is early identification of hearing loss important?  I'm not going to read these to you, because you know them, but basically these are things that we emphasize when we're working with physicians, especially pediatricians, because a lot of pediatricians will never see a child with hearing loss in their practice or they might only see one or two, so we talk to them about how hearing loss can interfere with communication, how there's a narrow window for brain development.
So if you're like me, I'm a social worker, not an audiologist, don't these people know that?  Amazingly enough they don't remember this from medical school because they have a wide breadth of knowledge they have to master and this is a narrow piece that doesn't come up in their practice and they really don't remember this.
We talk to them about how newborns can receive early intervention services and get hearing aids as early as four and five weeks, if you can do insurance and earmolds that quickly.
We talk to them about intervention by six months which we as EHDI professionals know and parents know, but sometimes physicians don't know, so these are all things that we try to cover with our outreach with physicians and part of what's in our letters and our risk factor stuff.
The long‑term implications of hearing loss without intervention, any degree of hearing loss, again, you guys know this, any degree of hearing loss can have an affect on child's speech and language, development, social and emotional academic success and this is really a number one point we try to make in all of our outreach.
Children with any degree of hearing loss can have educational delays and miss up to 50% of classroom discussion and we know kids learn through incidental learning, what's going on around them, and this is something they're missing out on.
37% of children with any kind of hearing loss, with even minimal hearing loss end up repeating a grade, at least one and sometimes more.
Unilateral hearing loss in Kentucky is not covered in our criteria and they'll repeat a grade and unilateral hearing loss is something that physicians are not up to date on.  A lot of physicians even in the hospital when a child fails their newborn screen on one side, say they've got one good ear, right?  [Chuckles].  These are all things we are aware of in Kentucky and using to make our outreach more targeted.
So this is a study from Boystown, earlier identification of hearing loss versus later identification of hearing loss and it looks green on the screen here, they are less than six months identified and the red or brown on that screen are greater than six months identified with hearing loss and you can see as the age progresses, the difference in outcomes, the language age which is on the vertical column is much more pronounced the later someone is identified.
And these are factors, again, that we're using to drive our work around risk factors and what we're doing with our outreach.
We know there are risk factors for hearing loss and the newborn hearing screening, and that's what gets the most response, if you fail that test, as an EHDI program in Kentucky and nationally to make sure those babies get follow‑up but we also know that kids that have certain risk factors develop hearing loss later or they have a mild hearing loss that's not detected during the screen and progresses to a more serious hearing loss as they age.
So we capture a lot of these risk factors in Kentucky, we're very lucky to be able to capture those.
We capture them in our system called KY CHILD, that stands for Certificate of Live Birth, Hearing, Immunization, and Lab Data and these are the different modules ‑‑ this is a home grown system ‑‑ but they're all in there along with CCHD and that came later but they didn't get to be part of the name. 
[Laughter]. 
>> CATHY LESTER:  It's so sad.
Hospital staff actually enter all of this database based on parent report or information that comes from the doctor and it gets transmitted to the EHDI program electronically when that child is discharged and it is finalized and these are some of the risk factors captured in our Kentucky EHDI, and I know it's difficult to see.
We are in the process of updating some of these risk factors because we recognize there have been more current research out there that demonstrates that some of them aren't the risk factor we were led to believe in the beginning or, for example, sepsis, it's treated with ototoxic medications 90% of the time and if we're capturing ototoxic medications, we don't need to do sepsis, we're doing revisions along those lines as well and this is our current system and the updates won't be complete probably for a few months.
We capture at the bottom, low birth rate and other things you can see here.
So after we have captured this, then as an agency, we decided we wanted to look at the incidents rates of risk factors specific to Kentucky babies and so we asked our external evaluator and professor of public health if she did that analysis and I'll let her discuss that.  Liza?  
>> LIZA CREEL:  Thank you, Cathy, as Cathy mentioned, my name is Liza Creel and I work closely with the EHDI program with the HRSA grant and CDC grant as an evaluator and I'm also very interested in outcomes of children with special needs and children with hearing loss and that's been sort of the course of my career.
So it's very exciting to work with an agency that really wants to use data to drive decision making, practice change, and also policy change, and that's what we're trying to do here.
We're going to provide just a couple of examples, we're not going to bore you with data tables on different risk factors but I'm happy to share that with you.
We did run some annual and aggregate estimates of children with hearing loss from 2011‑2016 and it's right within the documented range within the literature, about 1.58 per thousand live births is the incident rate in Kentucky.
When we look at all of the risk factors, we can kind of run some pretty simple data statistics on statistical associations between those ‑‑ the presence of those risk factors and an eventual diagnosis, not just follow‑up for, but diagnosis of permanent childhood hearing loss if it is indeed reported into the state system, so it's a limitation of these data.
If a child is diagnosed at five and no one reports that into KY CHILD we don't know about it and it can affect our estimates here.
We want to show a couple of examples, highlighting CMV here and this is a hot topic, there's about 53,000 births in Kentucky each year and you can see across the six years there have been 60 cases where either mom or baby had diagnosed CMV at birth.
The reason we're grouping mom and baby together, it's a data issue alone.  Some of the data I have received say mom and baby, it is tracked separately and we're starting to track that separately, but for the full six‑year analysis we couldn't report it that way.
What you can see here and what the circle on the screen actually highlights is that the incidents, the proportion of children with CMV that are diagnosed with permanent childhood hearing loss is much larger than in the general population of children without CMV and this is statistically significant.  If you're interested in the test we use for this, they're very basic high square or a test depending on the structure of the data, I know most of you probably don't care about that, but this really highlights there is really a difference, more kids with CMV getting diagnosed with hearing loss compared to the general population of children born in Kentucky, at least.
Here's another example, this is maternal exposure to rubella over the course of six years, there have been 17 moms with exposure to rubella.
The child of one of those mothers was diagnosed with permanent childhood hearing loss, it's a much larger proportion, although a small sample, with permanent childhood hearing loss compared to other children whose mom did not get exposed to rubella.
Here is Persistent Pulmonary Hypertension of the Newborn, those with PPHN, 1.6% of whom end up with permanent childhood hearing loss, much greater proportion compared to other children without PPHN.
There are many examples here of all the other respecters, Cathy listed off and I'll gladly share those with you if you're interested in anything specifically.
Anything statistically significant except maternal syphilis which we do see a connection between that and hearing loss we don't see that with sepsis either, probably because the true underlying relationship is the ototoxic med where we see a relationship.
The last table I want to show you is we actually have some evidence that, and we can categorize risk factors in sort of 0, 1, 2, or 0, 1, and more than 1, which is what we've done here and try to determine whether or not it matters if a child has more than one risk factor and whether or not that makes a difference in terms of their risk for permanent childhood hearing loss and it seems like it does.
We have about double in terms of percentage, the proportion of kids with more than one risk factor who end up diagnosed with permanent childhood hearing loss compared to kids with just one risk factor.
And what this data helps us do is drive interventions to providers to raise awareness what respecters is really important and use these data, and data reported in the literature and nationally, to inform that outreach and educational intervention in this area.
And I think really kind of helped our advisory board team develop the protocol that Dr. Theriot is going to tell you about now.  
>> JUDY ANN THERIOT:  Thank you.  Hi, everybody.  I think the gist of everything that we're talking about is you have data, you want to do something with it or else why do you have it.  
So this is the active catalyst to make things change, so we try and look at all of these different areas with the advisory board, quality improvement, early intervention, education.
And we have a bunch of different people that are pretty active with the board, so we have parents of kids that are deaf or hard of hearing, audiologists, SLPs, pediatricians, ENTs, neonatologists and we have our health friends, the hospital screening representatives, the family organizations, Hands & Voices, and then of course EHDI staff.  
And these are different things that we're doing in all of those categories, with outreach, with the data, and then under quality improvement with our risk factor protocol.
And how we got everybody kind of involved in doing this, and I have to credit Cathy for forcing people to have a working meeting.
So when we go to these meetings, we know we're going to have to work, and so we have initial discussion, we talk about old business, we report out, you know, what's been going on, and then we break up into our work groups and initially we had a parent group, an audiology group, and a medical group, and then we realized that the medical group and the audiology group were talking about the same thing, so then we just combined that group.
But after everybody gets together in their groups and decides what the problem is, what they want to work on, what barriers exist, and what we can do to attack those barriers, then we get back into the big group and report out and say hey, what are we going to do?
So that's kind of how we have it set up.
Am I right, guys?  It's working ‑‑ 
>> It's very functional. 
>> JUDY ANN THERIOT:  It's very functional.
So one of the things that came up was everyone knows, and when I say providers, I'm really talking about the pediatricians, you know, ask any of them, they know oh, yeah, newborn hearing is important, and then that's kind of it t stops there.
They really were unaware of risk factors, except for maybe CMV and they weren't following kids with risk factors, they had no idea, and so even in NICU in the neonatologists, they said normal hearing screen and didn't say it has these risk factors and therefore get an exam at three months.
So, what did the board do?  We got together, we looked at existing guidelines and risk factors, we looked at our specific EHDI data from Kentucky with Liza, and looked at peer‑reviewed articles and things, and we came up with our own protocol.
And this took about a year to do, so it wasn't an easy thing, it was a lot of conversations, a lot of back and forth.
And we really wanted to make the protocol one page, so you can take it, you can stick it on the wall, you can, you know, have it easily accessible in your busy pediatric practices.
And the protocol has the risk factor listed on the left‑hand side, any special considerations, and then the initial evaluation, and then the follow‑up or each of the risk factors.
And we divided it up into red and black risk factors.
Yes, ma'am?  
>> CATHY LESTER:  Okay.  So I'm an idiot, I had the risk factor protocols for everybody, I even laminated them, and they're in my room. 
[Laughter]. 
>> CATHY LESTER:  So I'm going to literally run to my room really quick and bring them down.  But she's going to keep going because we have, like, five minutes.  So I'll be right back. 
[Laughter]. 
>> JUDY ANN THERIOT:  I know, I remember talking about that vaguely.
So, the red and the black risk factors, really they're all risk factors, but the team really felt that it was important to divide it up between red and black because of ‑‑ it just made it more clear on the grid.
So, if you look, family history, it suggests that if the baby passed their newborn hearing screen, that you do annual evaluations through the age of five.
If the baby was on Ecmo and they had a normal screen, then you do it every three months until they're three, and then every six months.  So it's very specific.
Because that was also the problem when you had a physician that was aware that something was a risk factor, they didn't know the proper protocol to follow‑up.
And then as you all know, it depends on where you go to look it up, you're going to get different answers, slightly different answers, but different answers.
Flipping to the black risk factors, ototoxic medicines, if they passed, then they're okay, just PRN for concerns.
And that one, it was interesting, because that one is the one that the physicians, you know, lock on.  That and CMV and ‑‑ but there's so many other ones that need more frequent follow‑up than that.
And just a really quick note about family history, we all know that family history is a risk factor for childhood hearing loss, you have to make sure you know how to ask that question.  Not that we don't care about grandpa but we only care if grandpa had hearing loss when he was a child, let's face it, so when you're asking parents questions, ask did anybody in the family have a hearing loss since childhood?  Don't just say anybody in the family with a hearing loss.
I know this sounds so simple, but you would not believe what I hear people say out there.
So, next steps, we're going to get together and we're going to try and do more collaborative projects.  The next one, looking at the best practices for the testing modalities, and try and disseminate our risk factor protocol more widely by doing presentations, by mailing it out.
We're trying to do the just in time learning so when a baby is born with a risk factor and they pass their screen, when we mail out the results to the doctor, we're mailing out the protocol and we're telling them look, this baby passed, but they have a risk factor and here's the screen or here's the grid to look at.
So, that's our plans.
Do you guys have any questions?  
>> [Away from microphone and unable to clearly hear].
Is that on now?  Can you hear me?
Okay, I'm just curious how you determine the interval between a pass on an infant hearing screening and when you want follow‑up?
Because the numbers that you presented are very different than I've seen before.  
>> JUDY ANN THERIOT:  It depended on the risk factor and we looked at the literature, we looked at what was published out there and some of the new articles that were coming out and in the audiology literature as well as the pediatric literature, which are very different.
And just combined them all.  
>> Yeah, for example, ototoxic meds, those medicine can stay in the ear for months and months and months and I'm a little concerned that you're not following them up at least once or twice once they're out of hospital, because they could pass a newborn hearing screening and have a hearing loss in six months. 
>> JUDY ANN THERIOT:  Well, that's a good point, and we might.... we might change that.
The most ‑‑ the best part is that it's a fluid, it's fluid.  Like, the more information we get, we really want it to be evidence‑based and useable, and that's great, and that's ‑‑ and that's ‑‑ and that's part of the arguments and why it took a year or more to do, because we had very different people saying I want this, I want this, I want this, and then they brought evidence to support, you know, what they wanted, and so it was a true compromise.  
[Pause].  
>> Do you have any plans specifically for outreach with speech‑language pathologists more than a year or ‑‑ 
>> JUDY ANN THERIOT:  Yes, that's part of our advisory board to get it out with the part C because honestly, sometimes the pediatricians are the last to know, I mean, they see the baby, you know, they see them six months later and they have a hearing aid and they weren't part of that process at all, and so you're right, there's ‑‑ we just kind of saw this big ‑‑ I saw this big gap in the medical community, so.....
I sound like I'm really talking the doctors down [laughs].  I don't mean to do that!  
>> CATHY LESTER:  Can I say something quick?  I brought 40 and we obviously had more than 40 people here, but I've got a notebook going around, if you want, I will e‑mail the document to you, I'll even snail mail a laminated copy if you want one, just indicate what you want and put an address down there if you want that. 
>> JUDY ANN THERIOT:  Any other questions?  
[Pause]. 
>> JUDY ANN THERIOT:  Yes, ma'am?  
>> You had mentioned that you guys do outreach to physicians.  How did you guys find the most effective way to reach those doctors?  I know they're busy.  How did you target them?  
>> JUDY ANN THERIOT:  We're still doing ‑‑ we're still doing a lot of that.  We're going to grand rounds, we're going to the different conferences and hitting them with the medical students in the residency programs and getting the younger learners and we're doing the just in time and mailing it out, I think that's the best thing, mailing out the chart with, you know, the baby's name, basically, on it alerting them that the baby has a risk factor. 
>> CATHY LESTER:  One thing we tried to go into practices and get us to do a lunch and learn kind of thing and we had zero people take us up on that.  I mean, zero.
We even tried to target physicians that we knew had a loss to follow‑up in practice and we would say that, Dr. Theriot would say hey, we see you have a lot of babies, no response at all.
Once we started sending in 2015 and again in 2018, once we started sending letters to specific physicians about babies this their practice, that's when we saw more collaboration and engagement from physicians.
When it became real about a baby in their practice, they were much more willing to cooperate with us. 
>> JUDY ANN THERIOT:  And they call us because our contact information is on the letters.  
>> CATHY LESTER:  Yeah.  Julia?  
>> [Away from microphone and unable to clearly hear].
Oh, sorry, when do you send the letters to the PCPs with a child with risk factors?  
>> CATHY LESTER:  When the risk factor, when those are documented and come across to us from KY child. 
>> You don't wait six months or anything. 
>> CATHY LESTER:  No, no, no, we send them right away. 
>> That's what I wondered. 
>> JUDY ANN THERIOT:  And to the doctor's defense, they don't get lunch time anymore, we did a lot of lunch and learn, because of electronic medical record, they don't get it so you can go to their office thinking you'll do a little 30 minute thing and you never see the doctor, you're just seeing everybody else, so.... that's part of why it's not working.  [Laughs]. 
>> Anything else?  
>> Run, Liza, run!  
>> The air is coming out. 
>> I'm wondering if you're going to be able to or planning to track the risk factor audiology follows‑up visits in the EHDI data system or how you'll know that a change in practice has happened?  
>> CATHY LESTER:  When babies come across electronically, we keep the babies that pass the newborn screens but are risk factors, we keep the case open for 13 months and if they get a follow‑up, that's generally documented and we know when that happens.
We have not, however, pull any kind of reports to look at that because this is still so new.
I think that might be a goal for maybe 2020 is to pull 2018 data and say okay, how many of these risk factor babies actually did get follow‑up and see what happens with that.
Back in the back.  
>> Talking physician‑to‑physician, please forgive me, I don't know if there is physician‑to‑physician education, would they listen to their peers?  
>> JUDY ANN THERIOT:  We've tried that and they ‑‑ 
>> CATHY LESTER:  That's what she does. 
>> JUDY ANN THERIOT:  That's what I do and I think everybody is attentive and interested, but then, you know, it doesn't ‑‑ it doesn't ‑‑ it doesn't ‑‑ 
>> CATHY LESTER:  Stick. 
>> JUDY ANN THERIOT:  Yeah, unless they have a patient. 
>> [Away from microphone and unable to clearly hear]. 
>> JUDY ANN THERIOT:  Yes.
Any other questions?  
[Pause]. 
>> I enjoyed your use of incidents data and the P value.
Did you present that to physicians as well, or.... 
>> JUDY ANN THERIOT:  I have a few things. 
>> Okay.  
>> JUDY ANN THERIOT:  Because you're right, I think not only the statistics, but it actually being Kentucky babies, data from Kentucky babies makes a difference. 
>> CATHY LESTER:  She puts it in her presentations.  It doesn't necessarily ‑‑ we don't necessarily ‑‑ those of us that are not academic don't necessarily talk about that. 
>> Okay.  
>> That's a good suggestion. 
>> That is a good suggestion. 
>> To use that data as resources and information [Away from microphone and unable to clearly hear]. 
>> JUDY ANN THERIOT:  And I think some things are clicking because we've had I think since the letters have been going out, people calling, people that might be doing OAEs in their office and now are realizing that that's, you know, as a follow‑up, and then the EHDI program never gets that information, they're learning that that might not necessarily be the best thing to do, depending on the risk factor, and also reporting it back. 
>> CATHY LESTER:  Mmm‑hmm.  And when we send letters to the physicians, the risk factor letters, they get a letter that has all of the approved audiology resources in Kentucky and get that risk factor protocol and the letter that's the cover letter says, you know, the risk factor is this, please refer to the attached protocol for next steps in your practice.  
[Pause]. 
>> JUDY ANN THERIOT:  Because we have an OAE in our office and, you know, yay for us!  We're doing a great job. 
>> CATHY LESTER:  [Laughs]. 
>> JUDY ANN THERIOT:  But, you know, that's not necessarily the thing you're supposed to do. 
>> CATHY LESTER:  And we don't usually get the results. 
[Laughter]. 
>> JUDY ANN THERIOT:  And we never send the results!  
>> CATHY LESTER:  But we love her anyway. 
>> JUDY ANN THERIOT:  I didn't know that until I started this!  
[Laughter]. 
>> JUDY ANN THERIOT:  See?  [Laughs]. 
>> [Away from microphone and unable to clearly hear]. 
>> CATHY LESTER:  The hospitals report that when they do their electronic submission of data with the referral. 
>> [Away from microphone and unable to clearly hear]. 
>> CATHY LESTER:  It's not always correct, sometimes it's just the baby that sees them in the hospital, but the vast majority of them are correct. 
>> JUDY ANN THERIOT:  And that's getting better, it's tied to the dried blood spot.
Oh, okay.  Thank you.  
>> CATHY LESTER:  Please do your evaluations and thank you all. 
>> JUDY ANN THERIOT:  Thank you.  
[Applause].
[End of session].

** Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings. **