ROUGHLY EDITED COPY
2015 EHDI CONFERENCE
Spreading the CMV Message: The Who, How, What, and When
March 10, 2015, 9:40 A.M.
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This is being provided in a rough-draft format. Remote CART, Communication Access Realtime Translation, is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
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Welcome to 2015 EHDI!
"Spreading the CMV Message: The Who, How, What,and When."
ALYSON WARD: Okay. Let's go ahead and getstarted. Can everyone hear me okay? No? I thinkmaybe the guy stepped out a little bit too quickly. That's fine. Better. Is this better? Oh, quite abit. Okay. Okay. This session is entitled"Spreading the CMV Message: The Who, How, What, andWhen." And my name is Alyson Ward, and I work at theNational Center for Hearing Assessment and Managementand I'm involved in two primary things and I overseeNCHAM's methods and some of the work we've done withcytomegalovirus, which is what we'll be talking abouttoday. I don't know if you've had a chance to attendthe other CMV breakout sessions, but this is abreakout session and we'll work on target messages andwe'll do that for about 20 minutes and have about 10minutes at the end to share the messaging that yourgroup came up with. We're glad that we have a goodturnout to have some good brainstorming going on andI'll turn the time over to Sara to get going.
SARA DOUTRE: Hi, my name is Sara Doutre, andI'm a parent of a 4-year-old. My 4-year-old daughteris Deaf due to CMV, and I also -- my background is inspecial education and special education and earlyintervention policy. I worked at the Office ofSpecial Education Programs for about six years andwork in that field of special education. So the CMVmessage is both personal to me but important on theprofessional levels of viruses that can causedisability. As Alyson said, we'll talk about what isCMV, we'll move through that quickly and talk aboutthe lack of awareness and public health standards, Iguess, best practices for messaging, for public healthinitiatives. This is focused on the awareness andeducation part of CMV and not the screening piece thatsome of the other sessions have focused on. Thenwe'll break into the smaller groups and share out.
So to talk about CMV, just by a raise of hands,does everyone have a basic understanding of what CMVis? CMV is cytomegalovirus. So we wanted to gothrough some of these. I went through some slidesabout things you may not know. So you may know thatCMV is cytomegalovirus. Do you know that it's themost common infection infants are born with? CMVcauses more than the 19 currently screened conditionsin most states. So it's common on its own, but alsocommon in comparison to the other conditions we screenfor.
You may know that CMV lives in bodily fluid likeurine and saliva. Did you know that it can live incrackers or bread crust for up to six hours? So quiteoften our messages have been about washing your hands,not kissing on the mouth, those kind of things. That's another thing to consider. It can live incrackers or bread crusts that your child eats theinside and you clean up because you're in a rush andthat's your sustenance for the day. It causescerebral palsy and other disabilities. Did you knowthat CMV can cause miscarriages? CMV-positive womenwere seven times more likely to have a miscarriagethan CMV-negative women.
You may be thinking about, how does this apply toEHDI? Who are the groups we're targeting? Who arethe groups we need to be working together with at thestate level for public education? Is this broaderthan the hearing loss and EHDI silos? So I'mbroadening the message a little bit here.
You may know that CMV is the leading nongeneticcause of child and hearing loss, that 50% of childrenwith CMV-related hearing loss will have progressivelosses, so they recommend hearing tests every sixmonths for children identified at CMV-positive.
You may know that a pregnant woman has to have anactive CMV infection to transmit CMV but many have arecent infection or CMV, so there are some that ifyou're seropositive, as a woman, that you've had a CMVinfection in the past that you are safe, that youcannot pass that to your unborn child, but recentresearch shows that's not the case. There's stillresearch on the disability decreases, but the numbersbabies born with CMV does not decrease based onseropositivity.
You may know that women and children are more asrisk for transporting. Did you know thatAfrican-American and Mexican-American women are moreat risk to transfer CMV to their unborn children? Andcongenital CMV has pregnancy outcomes from theDepartment of Health and Human Services. You may knowthat scientists are would go on a CMV vaccine but in1999, a CMV vaccine was assigned the highest priorityfor vaccine development by the Institute of Medicinealong with the flu vaccine and CMV is a much morecomplicated virus than the flu virus, but guess howmany had a flu shot this year would be pretty high.
So that is -- I'm going to transition over toAlyson with that. Again, looking at CMV from a fewdifferent angles as we talk about planning for publichealth awareness on CMV.
Are there any questions to this point for any ofthe content I presented? Anything you were surprisedby? Or is most of this information you already had? Yes. The questions spring up, definitely, feel freeto stop us.
Okay.
ALYSON WARD: So I'm going to talk a littlebit more about the awareness piece, and as Sara wasmentioning, CMV is gaining traction with certain partsof public health or in the care community, but in thegeneral population, awareness is still pretty low andeven in some medical populations, awareness is prettylow so I'm going to go over reasons that you may nothave heard of CMV or your neighbors may not have.
These are the awareness studies that have beendone, both in the U.S. and abroad, and it highlightsthe lack of awareness that exists in differentpopulations. So in a survey done with -- by Ross in2008, there was a sample size of 2,656 women and only14% of that population had reported that they hadheard of CMV, and this is just heard, right? So maybeyou've heard the acronym, CMV, and never put anyprevention behaviors behind it, so it's basicinformation.
And Michael Cannon replicated the Ross study in2012, with both men and women, about the sample twicethe size of one done with Ross in 2008, and still,only 13% of women had heard of CMV and 7% of men hadheard of CMV. So four years later, there wasn't muchof an increase about basic awareness of CMV.
And then awareness of pregnant women, which isthe target audience. Women who are pregnant orbecoming pregnant, we haven't gotten the word out withthis important target audience. So for today in 2012,this was in France, there was a sample size of 362women and 60% of the women in this sample size hadheard of CMV and 72% knew how to prevent CMV. Sowe're getting a little bit better in here, which iswhat you want to see. You see as we go on that's notconsistent. And Lim in Singapore did a study and 20%of that population had heard of CMV. So that's notshowing so well, as well as the France study had.
Okay. So here's a little bit more aboutknowledge among pregnant women. Morioka in 2014, 343in Japan, 18% of those women had heard of CMV, whichis still relatively low, and 70% of those knowledgehad no knowledge of the transmission of CMV and 85% ofthose women had no knowledge of how to preventcontraction of CMV. And then in 2013 there wasanother study with midwifery practices in theNetherlands, so that's a little bit differentpopulation, babies born out of the hospital in apopulation or a sample size of 1,097 women, 12% ofthose women had heard of CMV with none of themreporting specific knowledge either about transmissionor prevention behaviors.
And then U.S. medical students, so Bayer, in2012, 422 different medical students, that was donewith both the first-year and second-year students, inthe first year, only 34% had heard of CMV, and by thesecond year, 100% of them had. So that must have beenin their curriculum in this particular sample size wasassociated with that second-year curriculum, notnecessarily causal, but association.
And then childcare providers, like Sara mentioneda few minutes ago, childcare providers have specificthings -- the podium is not big enough for all theslides. (Away from mic). Okay. So the childcareproviders, in a study done by Magnuson recently in asample size by the state of Utah, so that obviouslyhas some limitations to this, so it's notgeneralizable across the population that everychildcare board in every state is a little bitdifferent, so there's going to be some differentregulatory practices and things like that. So inUtah, there was a sample size of the 14 licensedcertified childcare providers, and they mailed in thesurveys and they looked at awareness of viruses,bacteria, and parasites amongst these childcareproviders.
It's a little bit small to see, by CMV is righthere, so it's a small percentage, with most of thembeing aware of influenza which is the flu and RSV, atypical virus spread amongst children, and rotavirusis prevalent in childcare settings, and then the otherhighest one is rhinovirus. So you can see the peakshere and CMV is highlighted in the green, so theknowledge of CMV was relatively low. And just tohighlight a little bit more about childcareproviders -- who has been in a childcare setting? Ialso think of them as like Petri dishes. They're aperfect breeding ground for bacteria and viruses, tospread things from one another, and looking at thechildcare population is so important, and the childcan contract it in a childcare setting, go home totheir pregnant or planning on becoming pregnantmother, and the next thing you know, that's a perfectpathway of CMV to the unborn child or potential unbornchild.
So conclusions, I know that was a lot of researchthat we'll springboard off of, but in conclusion, therelative knowledge of CMV is low, as well as evenlower is that specific knowledge about transmissionand behaviors to prevent the transmission.
Okay. So CMV resources, this also came out ofthe study from Zachary Magnuson in 2014, so they werelooking at places that women want to hear aboutinformation regarding CMV or where pregnant womenreally assess information. So the primary careprovider was the top source. Internet, families,blogs, and books are ways that women assessinformation. I told Sara, I printed an article barelyreleased by Price, and several of her colleaguesshowing that women, you know, and again, this is asample size, so you have to take that into account. It hasn't been replicated to really show thereliability in different populations, but in thisparticular study, the women could rate the highestplace that they would like to get information aboutCMV from and the majority said they would be more openif it was provided by the pediatrician. The secondhighest group was OB-GYN. The third was a primarycare provider, not necessarily an OB-GYN but aninternist, and the fourth was actually parentingmagazines, so I thought it was interesting. It didn'teven about to WebMD, it went to parenting magazines,and that's good information to know as we move intotalking more about the marketing stuff.
Okay. So the path ahead. I always think ofwhere we've come from and where we're going. That'show I always look at public health. Even in the EHDIworld, there is been so much progression, but we stillcenter a long way to go, with loss to follow-up andCMV, we're looking at this awareness piece andincreasing awareness. So I do have to admit, this ismy cute daughter that we're taking a peek at nearbywhere we live and she's right here, she's come a longway, but she's still right here and has to keep goingup. This is when she starts to get grouchy, but shehung in there.
So where do we want to go from there? Looking atthe information that we're provided, looking at thecontent, looking at the awareness piece, just evenhearing of CMV versus that transmission and preventionbehaviors, and this is where we'll spend the majorityof the rest of the session, how can we market the CMVmessage so we get to to the population that we want tohit, which is pregnant women or women who plan tobecome pregnant? Those are the target audience, butthere's different channels to getting to moms, right? Or future moms.
So before we dig in, this is where we're goingwith the who, where, what, how, but before we dig in,there's three overarching questions about publichealth campaigns. Who here has been involved in theplanning, implementation of public health campaigns? Would you share with me, give me a couple of people onthat planning team? Would you be willing to sharethat? She's bringing you the microphone, so everybodycan hear. Sorry. I'm not sure if it's on. Okay. Ican come down there. This is --
AUDIENCE MEMBER: Hi. I'm talk aboutsomething different than EHDI. Many of the -- I guessit's one of several years back a law was passed inMassachusetts to provide medical services for kidswith PKU and it was written with a sunset clause in itso they had to get together with people that couldlook at this piece of legislation and determinewhether or not it was feasible and that it wassomething that was important and something that shouldbe continued. So the group they got together was agroup of multidisciplinary professionals, parents andlegislators, just about everybody at the meeting, thehealth insurers, the Mass health insurance that paidfor the foods for children, the kids on the Medicaidprogram, and basically, data had to be looked at andanalyzed and the cost, there had to be a costeffectiveness study done and the law was passed andwe've had this law in place for many years. It's likehow we do it in public health.
ALYSON WARD: Great. I think I saw anotherhand over here for someone who has been involved in apublic health campaign. That was a great example,Janet, and I appreciate you being willing to share it. What I heard Janet say, when they were bringingtogether a group to work on raising awareness aboutPKU, that you had legislators, parents, physicians,the public health component, but I want to justemphasize that the public health campaign should notbe developed in a bubble. And particularly with theCMV message, there's some questions whether EHDIshould lead the public health campaign, that theremight be more appropriate agencies in your state thatshould take the lead. Not that EHDI shouldn't beinvolved, because we've talked about in many sessions,CMV is inexplicably linked to hearing loss, and that'swhy EHDI does need to be a player, but we need to havea representative group of who would be a part of agood public health campaign regarding CMV.
So going back before we dig in, the threeoverarching questions is the amount of funding youhave, sometimes it's all zero, as we know. Sometimesit can reach $300,000. It all depends on if it'ssomething by funded by any grants that you receive orany foundational money that you might receive, andstaff and volunteer resources. I mean, there aretimes that we do heavily rely on volunteers, butthat's not always the best sustainable option, andwe'll talk about that in just a minute. And the thirdis that length of time. How long can you reallysustain a campaign? Anybody who has been involved inlike this top banner here, the long one that says, CMVduring pregnancy can harm your baby, that ad actuallyrun on the site of buses in Utah after they passed theCMV legislation, and putting it up in buses can becostly, so sometimes you can only have them up onsnapshots of time. So you have to think about this,is this something that's going to be ongoing, are wedoing it periodically over the years, so you have tokeep that timepiece in the back of your head.
And I call this a balanced measure, this is my QIhat coming in. You have to look at sustainability. Often in public health, we get short-term funding forthings, but once that funding runs out, the programgoes away. So that sustainability component,especially if you have the players at the table wewere talking about, that can help your campaign overtime, especially if you have people on the committeethat can bring in some other funding sources.
Okay. So let's go into the who, and this is whoyour target audience, is and I was talking about thestudy from Price that women were looking atinformation, that they wanted to get information fromtheir pediatrician, the OBs, the PCPs, and then wemade the leap into parenting magazines. But who doyou want to target? Because that really will changehow you approach messaging.
And then we have -- Sara has talked about wantingto do like a campaign designed for grandparents,because sometimes grandparents have more time thanbusy moms and dads, and she's mentioned, I wish wecould do something and just focus on grandparents,which absolutely would change, not just your message,but how you get that message out, so we'll keephitting on these things as we go. So like I said, thewho really sets the stage for the what, when, where,and how, so keep that in your head, because we aregoing to break out into small work groups in just aminute and have some ideas of who you really want totarget.
Okay. So let's go into -- what. So this is whatis your ask. What are you asking them to do? Cananybody think of any type of public health campaignthat you see billboards for or magazine ads for orradio ads for that you see around your community, moreat a national level, that you're willing to share? Iknow that you said that you saw some on the way here,Sara. I don't know in you remember what they were.