ROUGH EDITED COPY
EHDI
FEBRUARY 28, 2017, 3:45 p.m. PT
GRAND HALL A
Otolaryngology and EHDI Outreach and Collaboration
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This is being provided in a roughdraft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
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> Good afternoon, everyone, welcome to otolaryngology and EHDI outreach and collaboration.
> Last session. You guys hanging out in the back? We're going to keep it casual, right? All low key, nothing too strenuous. But thank you for staying and coming to the presentation.
So I'm Kirsten Coverstone. Audiologist at the Department of Health in Minnesota. I'm an EHDI coordinator from the screening to diagnosis part of our program. I am privileged to have Melanie Wege who is audiologist as well and she's at our Department of Health and screening diagnosis. We are fortunate program, I know. No comment apted we're also privileged to have Abby Meyer who is a key part of our advisory committee and we are excited to have her. Full disclosures, we don't have any financial disclosures. Rats. So quickly kind of overview we've saved you in the abstract. But quick background on identifying improvement opportunities with the ENT community. Some of the methods we use to promote EHDI best practices specifically for the otolaryngology community. Evaluating outcomes. We're all rock stars on that. Investigating the etiology, supporting followup. Gentrification here.
Medical surgical options for.
But I promise when you leave, you will have something to take home that you can do. So wait until the end.
> MELANIE WEGE: I'm Melanie Wege. I'm an audiologist with the Minnesota EHDI program. Are you all hearing me okay in the back? Using this microphone? I'll try to be a little closer, better? Thank you.
Just to provide a little background on this, in 2009, as we were doing case followup in Minnesota we often get a copy of the dictated visit notes along with our standard data gets reported to us. What we were finding is kind of this circle of care providers with different recommendations when middle ear fluid was involved in particular. Where they were seen for their initial outpatient followup visit. Also saw otolaryngology on the same date and middle ear fluid. Otolaryngologists may have recommended this to ABR in many cases oat laryngologists wanted to continue following fluid until that cleared and present with an ABR. Real conflicting recommendations at that point. That was very confusing for families. What we were finding is 7% followup cases had history of screens. And so we started by making some initial calls to primary care physicians and discussed some of the critical timelines that we typically encourage families to complete the diagnosis on time. And in cases where the oat laryngologists have already recommended a delay in the process, primary care physician was often very willing to make a change in that. They just didn't do it. Just a little confuse caused by that community.
We proceeded on and made calls to the oat laryngologists. Some were very awkward in the beginning. The otolaryngology community was not used to getting a cold call from the Department of Health whereas, primary care is used to getting calls from some of the other blood clot disorders and having a close interaction with us. This was very different for the otolaryngology team. We hadn't talked it really revealed gaps in knowledge for some practices just a lack of understanding that that connection it is feasible and accurate at a very early age and qualified audiologist and also that get these babies into the clinic early enough that we can complete ADRs and they do not finish because they can't afford it. So these prompted us to see more systematic level rather than making individual phone calls where they weren't maybe necessarily impacting a changing process. Some first outreach efforts on a systemwide level was to create a flyer kind of focusing on middle ear fluid and still making direct referral for ABR if the baby still was not passing cousins and designed this flyer and had this present on the registration table. Unfortunately we were not IBM to have that placed directly in each attendees packet and in this and this wasn't picked up by very many people. Out of 50 attendees, they actually picked up the packet so this is a big fail for us. In 2012 NCHAM sent out a nationwide survey that went not only to otolaryngologists but primary care physicians nationwide in just surveyed attitudes and knowledge about EHDI. And the result of this was able to be pulled out by state and by providers. So we were able to separate responses from the otolaryngology communities specifically.
And it really validated what we had already suspected that there really was a need to be promoting the importance of EHDI and background knowledge to the otolaryngology community. What the NCHAM study was showing was that they were not mediate trick in nature and infants was not a large part of their practice and may not be fully aware 59% understood that it should be retested by one month.
And 34% felt that a unilateral hearing loss would not impact language development. So there was room for improving the knowledge base. We proceeded on to develop new educational materials. I don't have copies of these here with me today. But these are all posted on a Web site which is at the very end of the presentation and so I'd encourage you to take a look at those, access those and use those to inspire some development.
And so one of the first things that we developed was a guideline for otolaryngologists and this had three primary sections to it. The first focusing on the important timing of events during the hearing screening followup.
It also included a section on investigation etiologies and some of the followup processes that happened after diagnosis of permanent hearing loss.
And then the third section focused more on long term monitoring for risk factors so those with on the right side, greenish blue color we also developed an info graphic again providing some of the data background information that we were able to pull from our program specifically and just be able to use that data to again further support some of the recommendations.
That might be needed Kirsten pointed out both of these documents were developed in very close collaboration with our otolaryngology advisory committee members of which Dr.(saying name) is a part of and that really provided us with some really, really good guidance and insight into the information that would be most helpful for the otolaryngology community. So this additional piece was a twosided piece that included a specific flow chart again highlighting the important timing of our 16 guidelines and then some additional myths and facts just described important information that we felt there would be gaps.
We also were able to submit some newsletter segments to the Minnesota academy of otolaryngology newsletter. Again, all of this what not be possible without the input from our otolaryngology advisory committee members.
Copies of some of these new print materials were actually mailed out to the various otolaryngology clinics.
And then again we also had the assistance of our advisory committee ENT members to promote and discuss these documents with their colleagues. And get additional feedback for continued developed and feedback so we were able to post all of these documents again this is an example of our Minnesota academy of otolaryngology meeting although our first attempt at disseminating information at that meeting on the registration table was successful in subsequent years we were actually eager to register to have the booth where we had really good insightful discussions. Feedback directly from the otolaryngology community that really helped our future development and Bob has some of these documents.
So after several years of having this great conversation, and trying to disseminate some of this information and fill in some of the gaps that we had identified, we really wanted a way to identify if we were making a difference. And if with were able to find improvements in some of those knowledge gaps. Brave so going back to the 2012NCHAM survey, we were able to pull out key questions that focused on the EU1, 3, 6 guide lines and able to send that out via email and hard copy. We actually had an equal response wait for response rate for both method of disseminating that and then also followed up with a second email reminder but most of the responses actually came in after the first.
In 2016 then Minnesota Department of Health did send out our own survey to correspond closely to the original NCHAM survey and we had a very good response rate as you can see on the right side.
About 37%. Practice location was primarily Metro. This slide is somewhat confusing so, if you notice on the vertical access, the number of respondents, greatest number of respondents indicated that 20% or less of their practice included pediatric patients. So very much in line with that original 2012NCHAM survey.
Number of infants and young children identified and was very similar, most practices had five children or less that identified with them.
The next few slides that you'll see, again, focus on some of our key EHDI goals, screening completed by one month, diagnosis no later than three months. Early intervention no later than six months.
The wider portion of the graph of each pie chart were responses that were consistent with or matched some of those key EHDI goals and so for this slide, the way screening and rescreening completed by one month, you can see 2012 referenced 60% of respondents had a response that matched that goal and in 2016 we increased that to 90%. Positive result. Same with the next slide. Goal on this slide being diagnosis no later than 3 months. 2012 roughly 60% or so had a response that matched or was in line with that goal in 2016 more than 90% matched that goal.
Maybe a little misleading and again we tried to word things as consistently as we correlated to the 2012 survey.
So there wasn't a specific goal here. But our goal within one month of diagnosis and hoped that was going to be less. Again a wider part matching those responses in 2012, again roughly 55, 60% matched the goal in 2016. And same thing again for early intervention although in 2012, most responses most respondents understood that early intervention was important. 2016.
Related to unilateral hearing loss. 2012 just over 60% understood that unilateral hearing loss can impact speech and language development.
In 2016, roughly 80% understood that. So that's a nice improvement.
And then our bubble burst a little bit and although we did not have this question on the original 2012 survey to reference, as a baseline, this is a brand new question for us, we really wanted to find providing all this education and interactive collaboration, conversation, the broader otolaryngology was understanding the sponsor of making referrals for diagnostic so the goal would be to schedule for ABR in this situation where a baby is not healthy and has evidence of fusion but as you can see again from a wider part, less than 50% so answer that. So although we would expect that this was an improvement if we had the 2012 baseline needed to go back to, we can see there's still work to be done.
And then just for your information if you're interested in taking this back and creating your own outreach we just wanted to get indication of otolaryngologist indicating about EHDI an email just definitely will do.
So just to summarize it really was helpful for us to be looking at our data and kind of using that and kind of derive trenches and having those discussions to develop some of our planning and educational materials.
And continuing to have those individual conversations in defining and continuing to expand this effort was very helpful.
And then also just to be able to measure outcomes to continue seeing what our needs are, but also to give ourselves a little pat on the back for this effort.
At this point we had Dr.pediatric otolaryngologist at Children's Hospital of Minnesota. Dr.Meyer was also a member of our advisory committee council. And, in the process of completing her masters in public health, so she's got that perspective. Great. I'm so happy to be here. I kind of weaseled my way into the EHDI program in our state. With my perspective I've just been very important. And I'm so happy I've become more and more involved. Just a perspective from the ENT provider.
I think for pediatrician standpoint you send them off to us and you hear back hopefully. You say well if there's a lot of questions, why do they do that and what are they thinking? I'm here to kinds of give my perspective and then obviously if there's any questions, feel free to interrupt as we go. So when I see a child who may or may not be deaf or hard of hearing. Sometimes at the point when I see them, we don't know yet. They may have had their screen in the hospital. And they had a rescreen and have not yet passed. But it still may be up in the air. So there's questions, what's been done from a testing standpoint and what needs to be done? So me getting an ABR is a no brainer but that's a little unfair because I see children like this all the time. I only see kids. In my practice I'm one of the well we all see children with hearing concerns but I'm probably the one who focuses mostly on it or one of the few who does. So to me it's second nature. I don't have to think about it much but for the general ENT the community up in rural Minnesota that maybe doesn't first of all, see a lot of children and secondly children in this situation, it's a little bit more challenging. So in my opinion, there is no reason not to do an unsedated ABR. This is going to go down to the bottom. There's risks and benefits to almost everything we do. And families ask me are there risks? Yes. Before they can even finish asking are there risks, yes, there's risks to everything we do but there's risks to not doing things. But this is one of the few exceptions because for an unsedated test for that child, there is really no risk to that child. It may be inconvenient for the family or give to get to appointment. There may be a cost. Those are all other things but for me thinking of that child I really don't think there's any reason to do unsedated ABR. That's the that's what this project was trying to get this out to everybody so it becomes second nature to everyone that that's always the next step.
But then you say Okay. Say they had an ABR. How complete was it. How valid was it? How does everything seem to correlate? What does it look like? Looking over that testing and say Okay. Well, how complete is it? Is there anything else we should do to verify the hearing status before we then take the next steps. And then of course the history and physical exam that's what we do. That's what we're trained to do. As I'm talking to the parents, I also have one eye on the child just that taking in are they talking? What does speech sound like? This isn't just infants. This is any child that has potentially been identified as deaf or hard of hearing. What's their behavior like? How are they interacting with me? How are they breathing? All these things we've been trained to do and getting the history from the family is huge.
Physical exam is also important. What do the ears look like? It's hard to look in kids' ears. It's hard. It takes a long time to get first of all, comfortable with it and second to know what you're seeing. So you look in the mirror and you see is the child flailing about and for a baby with a super small ear canals that you can barely see, that's easy to say just look, it's easy to see. Ideally yes. It's really, really hard. And then the age of the patient obviously plays a huge role. If I'm seeing an infant who is five months old, and we don't know the hearing status, that immediately makes me a little anxious but it also plays into what are the next steps. They're five months old. We can't do it but what are we going to get the information we need. Do we need to sedate them. What's been done? What that's showed? How worried are we? What's the status of the whole workup and then I think that the fourth bullet is really important.
Is the workup going to change the options as far as next steps, management? Because if that answer is no, then you really have to look at the next bullet, the risk benefit. There better be if there's not options but better benefits. There better be something that child can get out of that test or the child shouldn't do it. There's risks to everything. That's what's going in my mind when I first see and walk through the door and meet the family with the child, what's going through my brain. I want to talk about conductive hearing because as Melanie talked about, the biggest reason for a delayed dying or loss to followup has to do with fluid. Changes in a child. If you're going to bet, that's the safest bet. Most of the time that is. But it's not always the issue. It's not always what's causing the increased threshold. It could be a vesticular malformation. That goes back to finding on exam on an infant it's not as easy as it sounds. Keeping that having a high index of suspicion, people are paranoid. Until the fluid is gone and you check, you don't know it's difficult in an infant when the ear canals are narrow. I am lucky I have a microscope and tools and if I have wax, I can get it out and look in a microscope. But that's an ENT in you look not all are comfortable with a 3millimeter in an infant and may not have the resources to do that. My medical assistants do it all the time. Okay. You can be there, mom, you can make sure your child sees you, talk, sing to them. I'm going to help hold the head. Okay. So conductive in nature by three months. They've had the ABR. Conductive. Paranoid. You don't know for sure if it's conductive until you prove it. So we've looked at our data at NPH and 10% who were thought to have a transient loss which kind of typically in most situations would need fluid actually didn't. They had a permanent sensorineural threshold. That's consistent with other studies about that 10%. It's high. 1 out 1 out of 10. Think about that. You have to prove it. You have to verify the hearing has come back in a typical range after the fluid has resolved. If you want to look at something from our literature, ENT, there's a little practice guideline that just came out in last year, about confusion and that's parts of the recommendation there. So a unified front, that statement technically only applies to children six months of age to 12 years of age. So for the newborn it doesn't Technically apply but I think we can extrapolate that.