Losing Ground: Cytomegalovirus Awareness

EDITED COPY

EHDI CONFERENCE

Losing Ground: Cytomegalovirus Awareness

3:00 P.M. 3:50 P.M. (ET)

FEBRUARY 27, 2017

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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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>MS. DOUTRE: ....CMV awareness in the United States. And I'm going to pass it on to the speaker.

I'm really excited to talk about this topic. I feel like I talk about this topic a lot, and this room feels a little formal, and I hope we can still have a bit of a conversation. So I want you to know if I say something I'm not going to spend a lot of time discussing what CMV is, but if there is a question that comes up or if you have a question, please raise your hand at any time with a question, and I will stop. This paper that I am presenting about CMV awareness in the United States was in the most recent issue of JEDI, Journal of Early Hearing Detection and Intervention. So if you would like a copy of the paper that has all of this information in it, you can get that at JEDI.USU.EDU, Utah State University.

I am a graduate student doing research with the National Center for Hearing Assessment and Management, NCHAM, and so this research was sponsored by NCHAM and the data was provided by the National CMV Foundation.

How many of you know what CMV is? Raise of hands.

Great.

CMV stands for cytomegalovirus. CMV is generally not harmful to the not harmful in the general population. Most people, considering the age of attendees at EHDI is, probably between, I don't know, 50 to 70% of us in this room have had CMV at some time in our lives. 1 in 150 of us at this conference was was born with CMV or had congenital CMV. And before she sits down, I just want to point out, this is Kayla, and Kayla is a graduate student at Gallaudet University, and Kayla had a congenital CMV infection, obtained a CMV infection in utero, and she's a graduate student at Gallaudet University and is studying deaf studies? Public administration. And, anyway, just so you know, yeah.

>MS. DOUTRE: She's an inspiration to me, and I am also the mother to a 6yearold with CMV, and so she's an inspiration to me.

So CMV, like I said, most of us have had CMV. Most of us felt no ill effect from CMV, and many of us will have CMV multiple times over our lifetimes especially those of us who are mothers. So it may be that we have a recurring infection or infection starts again. It may be that we get a different strand from our third child that they got from day care than we had from our first child who got it from a nursery school at church.

So CMV is common, and if there's one take away well three take aways I want you to take. They are that CMV is common. CMV is serious, and CMV is preventable. And that is what makes the data I'm going to present even more important.

How common is CMV? 1 in 150 babies is born with a CMV infection. That's 30,000 babies every year in the United States.

Only 1 in 5 of those will have any type of ill effect from that infection so 1 in 5 of those will be impacted. 4 out of 5, so 24,000 babies are born with CMV every year and have no ill effect. We we don't know unless we test them, and we don't screen, so we don't know.

So 1 in 750 babies or 6,000 babies every year are born with disabilities due to a CMV infection, a congenital CMV infection. Their mother acquired CMV probably from another child's urine or saliva or sexual contact with their partner who acquired it from a child's urine or saliva during pregnancy. This is pretty common. We're going to talk about how it compares to other disabilities, but one of the things we hear back often is CMV is rare. The other piece I want you to remind you about. How many of you work with children? How many of you know you work with a child with CMV?

Okay. For every child you know about that you work with CMV there are four other children that were born with a congenital CMV infection, and those children, children born with congenital born with CMV, a congenital infection, are shedding that virus for up to three to five years. Whether or not they're showing symptoms. Whether or not they have hearing loss, whether or not they have cerebral palsy. CMV is everywhere. So that's one thing I I always make a point to emphasize with providers is you may know about the kids with CMV. For every one you know about, there are four more that you don't know that are typical peers in your class or running around in your life.

So today we're going to talk about awareness, and the fact that awareness in the United States is very low. Awareness of CMV especially among women of child bearing age. Not only is it low, it's declining. So over the past ten years the awareness has decreased rather than increasing.

So the first study of CMV awareness one of the first was done in 2006, and it was a survey done by John, and they surveyed 643 women in 7 locations and they found that 22% of women had heard of congenital CMV. We hear that number sometimes, 21 to 22%. These women what we found from this survey was they knowledge about CMV increased with higher levels of education, and previous employment in a healthcare profession, but most women, even those who said they heard of CMV could not identify the modes of CMV transmission, so 23% of the woman who knew about CMV thought it could be avoided by avoiding cat litter. Do you know which congenital infection can be avoided toxoplasmosis, right. So we get a lot of confusion between those two.

This survey, the participants were recruited from outpatient clinic waiting rooms and OB clinic, university student center, and a medical school. So it was a convenient sample. Again, it's a little higher because of that.

Not going back to time. But the First National survey is that the CDC administers pays a company to administer a national survey every year called the HealthStyles TM Survey, and in 2005 for the first time they asked a question about CMV. About 5,000 people were surveyed, men and women. They were asked whether they had heard of CMV, where they learned about CMV, knowledge about the effects of CMV, and whether they would willing adopt preventative measures while pregnant. That survey found that 14% of women had heard of CMV. Again it confirmed for us, we keep finding out the more education women have the more they know. But the more they know is that that rates 5% higher than the people who are lower educated so it's really under 20%.

The important part of this is that 90% of women reported that washing their hands to avoid this infection would be very easy to adopt. 65% reported that it would be easy or very easy to not share eating utensils, and 48% reported that not kissing a young child on the mouth would be easy. For those of you who do not know ,this is how you prevent CMV are these steps and quite often the pushback we hear when we want to raise awareness from some people in the medical community is that it's a burden. It's a burden to ask these women to take these precautions. So the great take away from this survey is that most women reported that these precautions are easy to take.

In 2010, the HealthStyles TM survey was administered later, and closer to 4,000 women and men surveyed. 13% of women, and 7% of men had heard of CMV. They didn't ask about the precautions this time, but they did ask about women's engagement in those behaviors that increase risk. So the question was, while your youngest child was still in diapers, did you engage in these behaviors? And 69% of women reported kissing young children on the lips. 42% reported sharing utensils. 95% reported washing their hands after diaper changing and 65% reported washing hands after wiping a child's nose.

And so, again, the purpose of this data is to give you all a perspective of some people may think, I don't share utensils with my child. I would never kiss my young child on the lips. My young children have been on the lip kissers, open mouth kissers, and there wasn't much I could do to avoid that. And so while my daughter and my recent pregnancy I have a daughter who is three. When I was pregnant with her, my daughter with congenital with CMV, was still shedding and I made a conscious effort not to kiss her on the lips, and I still have a very strong bond with my daughter, and we were able to find other ways to share affection. So, again, this is more for your background to keep in mind as you're thinking about CMV awareness and the push back on CMV awareness.

Another piece showing how easily it is to increase awareness. So many of you may have heard of Dr.Gail Harrison who does a lot of work around CMV, and awareness, they did a survey that Baylor University where she is on faculty on first year medical students and only 34% of first year medical students so think about what someone has gone through to become a firstyear medical student, only 34% of them were somewhat or very familiar with CMV and then arch providing information in a course, 100% of second to fourthyear medical students were somewhat or very familiar with CMV. So, again, that medical education.

Another piece just again showing that low awareness, in 2015, Rosemary Thackery surveyed 306 licensed family, and residential care providers and they looked at awareness, and knowledge of prevention of different diseases and especially viruses. 18.5% of licensed family and residential child care providers had heard of CMV and how to prevent it.

99.4% were aware of influenza. 67.2% were aware of Giardiaia.

24.9% were avoiding cat litter if they were pregnant because they heard of toxoplasmosis, and they had heard of enterovirus, and how to prevent it.

So when we look at how common CMV is and how serious are the disabilities coming from it, overall there's just really low awareness.

So I was tasked with studying the results of the 2015 and 2016 Health Styles survey, so it was administered by the CDC, the National CMV Foundation, the CDC did not sponsor that question in the 2015 and 2016 surveys, so the National CMV Foundation paid to have those questions included in this survey to be able to continue to talk about awareness rates.

Again, 41 4200 people participating. They have high response rates. This is a survey that panelists are chosen based on their residential addresses, families without Internet access are given access to participate. It's very broad, and very expensive, so we just had the one question.

And the questions is, have you heard of, and then it lists the following conditions: Congenital rubella syndrome, beta strep, HIV AIDS, congenital CMV, Down Syndrome, and there should be another bullet there for fetal alcohol syndrome. Autism, spina bifida, congenital toxoplasmosis and parvovirus.

And there are some controls in there to look at knowledge, compared to others. So we did some descriptive analyses, and did a logistic regression with different models to see if we could find the factors that really impact knowledge of CMV, and one of the most important things we wanted to look at was this Model II here on the screen that we had data on whether these results responding to the survey, whether they had a child ages 0 to 1 in their home, and whether they had children ages 2 to 5 in their home, and so we wanted to look at do these parents of new babies or children who are most likely to be carrying and shedding the CMV virus, do they know about CMV?

So what we found overall was very disappointing and that is that the overall awareness rate continues to decline over the last ten years. So we've gone from again, that first survey I talked about it was a bit of a convenient sample so that 22% was higher. They were at doctor's offices and medical schools.

And then we went to the 13% for women, 9% for women, and now in '15, and '16, and for men in 7%, 6%, 5% in 2016.

Again, this is comparison to other diseases, and I think it's best seen in this type of chart. So what you have on this chart on the left is from those conditions in the survey, the percent of adults who are aware. So 6.7% is that combination for all adults. Men were at 5, and women were at 9. 6.7 is the all adults on the top here.

Congenital CMV fewer people are aware than toxoplasmosis than congenital rubella syndrome which was eradicated before most of us were born. Definitely before most women who are having babies today. Beta Strep, spina bifida. SIDs, Down syndrome, HIV/AIDS. That's the awareness there. So we go from 7% up to 85% of adults are aware of Down Syndrome and know what it is.

If we look at the frequency, you'll see if we take CMV away ,it kind of makes sense that if you look at that frequency of children with those other infections as infants it makes a lot of sense, but, again, this is not frequency born with congenital CMV. This is that 1 in 5 that are born with CMV and have some sort of disability due to CMV.

So I think this probably this type of display when you're looking at teaching people about CMV awareness in your state, tends to get a lot of attention because when we talk about do you know someone who has Down Syndrome, most people know someone who has Down Syndrome, and that means they likely know someone with disabilities due to CMV.

This is the regression model and for those of you who are interested I can show you later ,but what we found was that, again, females were more likely to know about CMV, but while they were more likely they were only oneandahalf times more likely than men. You're likely to know about it if you're a women but only 9%

Education, again, as education increases, we find an increase in knowledge. And then the other piece is that we found a lower knowledge among Hispanic families, which is especially concerning because we know from CDC data that the Hispanic women and their babies are more likely to be impacted by congenital CMV.

So this is another piece that I want to show quickly, and I apologize it's a little blurry. I couldn't find a better shot of it, but the other piece I looked at is what is called a late ENT class analysis. So I took these data and put them into software to decide if there were classes of people, and what this software found were four classes. And what you'll see if class I here in the majority of people, it's that 60%, and this is red line here. The other classes are much smaller. Class 4 is the second largest class, and what you'll see is we have this small class of people who is the blue line on the bottom, and they don't know about any of the diseases, right? They don't know about any of this. They're very low educated. And then we have two groups of people who disease knowledge fluctuates, and CMV is that peak the fourth point, I guess. But that point where everyone goes down, and so what is shocking is that when you look at the green group who I'm going to call the highly educated people, these are the most highly educated, the highest income when we look at this group. They still don't know about CMV. So it's not, like anyway. There's not a group.

When you adjust this for this is preliminary data. But when you adjust this for when you adjust it for the prevalence of the disease, it even more shows that people who know about everything else for CMV, it always dips down, so there isn't a group. We can't say, oh, the medical community in our state definitely knows about CMV we don't need to work on increasing their awareness.

So now I want to talk a little bit about so what? For a time check I only have about ten minutes, and I would love to hear from all of you so what? What does this mean to you? What are you doing in your state to try to change this trajectory of decreased awareness of CMV? What do you think is important? What do you think what is it that we need to get better attention to this? What what numbers would you like to see? What would be helpful for you?

>SPEAKER: I just wanted to say that in Georgia we had a speaker who talked about CMV, but she missed it but our Chapter Champion Dr.Todd has done an article on CMV, and it will be in our newsletter, and I think another chapter is going to be publishing it in theirs but randomly our immediate past president sent me a text message and it's like, did you see that stuff on CMV? So I think the physician community is perhaps increasing its knowledge, but I don't know that we have enough backing yet to say that we should screen, and I hear what you say about the data so that's very significant.