AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
LOIS BLOEBAUM: Good morning, almost afternoon. I'd like to thank you Sharon for inviting me to present. I'm Lois Bloebaum from the Utah Department of Health and I'm going to talk to you today about perinatal transmission in Utah, a very low prevalent state.
Perinatal HIV was not real high on our list of priorities because of its very low prevalence, but an opportunity arose through the AMCHP learning lab and we applied for that. The action learning lab which Margaret alluded to was sponsored by AMCHP and ACOG and basically, as Margaret mentioned, it's quality improvement process and it was designed to integrate the work of various health officials that normally don't always work together. And in our state we had not worked closely with our HIV bureau, so it was a wonderful opportunity. They also mandated that Title X and ACOG participant in the travel team.
This is the group of folks that we pulled together. As I mentioned, our HIV, AIDS folks at the Department of Health and myself representing Title V. We invited
Dr. Van Horn who's medical director of Planned Parenthood in Utah. And in Utah, we are rather unique in that our Title X funding does not go to the State Department of Health, but to Planned Parenthood. Then Michael Varner who is a perinatologist at the University of Utah and represented ACOG on our travel team.
We also invited two additional folks who weren't mandated. Hillary Evans is the Director of Community Grass Roots Project, Community Building Community in Midvale City which is an area of Salt Lake that is populated with many Hispanic families. Then Wanda Gutierrez who works with our Medicaid at the Department of Health.
So basically the action learning lab process involved a trip to Washington D.C. That was sponsored by AMCHP and we convened in D.C. In July of 2002. The benefit of the action learning lab process, and I can't speak highly enough for it because we would not have -- this group of individuals who have so many irons in the fire would not have had the opportunity to come together in an uninterrupted time span of two days and talk about this one issue. Especially for Utah being a low prevalence state, again not high on our radar screen, but a very important issue nonetheless.
During that two days, we were provided with excellent facilitation for our strategic planning and we were able to develop an action plan that guided our work over the next couple of years.
Basically the concept of the action learning lab involves a trip to set up the action plan, technical assistance throughout the year and then a follow-up trip at the end. And it's amazing how that follow-up trip at the end really makes you accountable for getting your homework done. So we really appreciate Sharon's constant harping on us and knowing that we had to present something in Chicago the following year, everybody kept to their assignments.
Just wanted to emphasize how low a prevalence we have in Utah. In 2002, we only had five pregnant HIV positive women reported. And in 2003, that number doubled. But still, you know, our birth rate is the highest in the nation. We have somewhere in the vicinity of 50,000 births a year. So you can see how small the prevalence is.
Among those women that were identified, these are some of the risk factors that we've identified, not unlike many other states I'm sure.
Our action plan, you know, we were trying to assess baseline data when we were planning what to accomplish over that year during our strategic planning and we realized that we really had very little idea about what was going on in relationship to counseling and testing in Utah. We did have some PRAMS data, in 1999 the survey included two questions. These were the two questions and as you can see, pretty low counseling and testing rates. Even though the questions are not very specific, it at least gave us something to start with.
So these were the two priority goals that we developed in Washington D.C. During 2002. And those were, you know, we don't know what's going on. So basically we needed to collect data on counseling and testing even though we had the PRAMS data, we wanted something a little more specific, and we wanted to assess the prevalence, you know, that were physicians reporting? And so that was another issue. And then to foster the integration of universal counseling and testing.
We were working at that time off the 2001 CDC guidelines that Margaret mentioned. This is just a review of those. Universal testing, flexibility in the consent process, et cetera, et cetera. You can read those for yourself.
So we embarked on a multi-hospital quality improvement project to augment our programs data and, you know, to kind of validate whether or not that was accurate. What we did was we conducted face to face surveys at four of our tertiary care hospitals in the greater Salt Lake area and trained nurses who were already doing research studies to conduct face-to-face interviews with women during labor. And this is the results of that QI project. The three questions were: Was HIV screening discussed during prenatal care? Did you have the test, and did you know the HIV status? The ABCD represents the four different hospitals, and as you can see, there's a very wide range of practices going on in our state.
The next thing we wanted to assess was what are providers doing. So we basically undertook a study to understand providers' perspectives and practices regarding counseling and testing. We partnered with our friends in the Bureau of HIV-AIDS, to implement a survey, and I have to say, I have to commend AMCHP again for providing excellent technical assistance in developing the survey. That's the glory of AMCHP is, you know, they have contacts with people all over the country who have done things and, you know, keeps us from reinventing the wheel.
So we were able to replicate a survey tool that was administered in South Carolina previously and then adapted it for our needs which was really helpful. We also were able to incorporate our ACOG partner to write a cover letter and make it a little more personal to implore providers to respond. So that was very helpful. We have a data base of prenatal care providers in Utah that we continually update and use as a mailing list source. It's probably not a hundred percent complete, but it's what we work with. And we include obstetricians, family practice providers and CMMs. We got a response rate of about 59 percent. And I also administer programs and I'm used to 70 to 80 percent response rate. So I was a little disappointed, but I'm told when you're dealing with healthcare providers that this is a fairly good response rate.
We did have a question on the survey. The first question excluded those providers who did not provide prenatal care and that was just five percent of the providers. So this gives you a little bit of demographic information about the providers, half of them were OBGYNs, 35 percent, family practice and about 14 percent CMMs.
In regard to location, 70 percent reported practicing in urban areas which is very similar to our Utah population distribution.
So these were the results of our survey, our provider survey. 70 percent of the providers reported offering it to all women which compared to our PRAMS data and our face-to-face surveys, there's a fair discrepancy. Again, you know, because of the low response rate that may account for it. Providers also may be responding the way they think they should be. So -- but this gives us a little more information.
This is just some analysis of some of what the various types of providers do. You can see that that this slide indicates that 83 percent of nurse midwives offered counseling and testing versus less than 70 percent of the OB/GYNs. In my previous life, I was a mortality review coordinator for Utah and did a lot of record extraction, and my experience there was that CMMs -- I hope there's no obstetricians in the audience. CMMs by and large do a really good job of counseling their patients as indicated by the medical records that I reviewed. So this didn't surprise us very much, but perhaps gives us some focus on where we need to place our emphasis.
This is just a gender breakdown, again, female providers, higher rates of counseling and testing than male providers, and that may be reflected in the CMMs versus the MD.
We wanted to question providers regarding their informed consent process. Some of our partners on our action learning lab team basically felt like informed consent, and you have to remember this, we were going on the 2001 guidelines before the CDC had done. They were just starting to come out with the opt out issues. So we wanted to survey providers because some of our partners felt that the counseling and testing was the barrier in a busy practice, providers are not going to take the time.
And so these are the results on the informed consent process. Most of the providers in Utah are -- were at that time doing informed consent and most of them were reporting that most all of their patients were being pre and post test counseled.
We question providers about their familiarity with the ACOG recommendations on counseling and testing and found that 74 percent of those surveyed were familiar with the ACOG guidelines, but 26 percent were not. However, the people who were not familiar with ACOG still counseled and tested their patients. Again, this could be the family practice CMM providers that aren't getting the benefit of some of the ACOG recommendations and probably should be.
This slide illustrates to you just how few providers are treating and diagnosing women with HIV. You can see that only 13 percent had identified or diagnosed a patient with HIV. Nine percent had prescribed antiretral viral therapy, and 16 percent had delivered an infant. So very low prevalence and because of that low prevalence, you know, our HIV partners are concerned about providers treating patients with their limited skills and lack of knowledge due to not using the information. Only half of the providers stated that they would co-manage with an infectious disease specialist. So this, again, is another teaching point for us.
Our Title II program, HIV folks, actually fund
Dr. Van Horn who is on our team to provide prenatal care service for HIV infected women at the University of Utah. I think this needs to probably be a teaching point around the State.
So these were the reasons that the providers offered for not offering HIV testing universally. And again p 30 percent said they didn't over HIV to all patients. The most common reason was the low perceived risks. So despite our messages to the importance of using universal testing, they still feel it's not warranted.
Some of the limitations of the survey. Again, I mentioned you know our data base of providers is not 100 percent, it's not ideal, so it may exclude some providers and the low response rate is always a concern.
So the recommendations that we came up with and continue to try to promote and implement include that women will be missed if only the risk based approach is used. We want to encourage providers and look for ways to implement policies and guidelines to facilitate the counseling and testing, ensure that providers are aware of any new and devised guidelines that come out. We need to educate our providers about the opt out approach and continue to do prevention and education to pregnant women.
The task force continues to meet despite the fact that, you know, we really don't have any support to do so. We formed a very strong partnership from the action learning lab process, and in fact last year, I tried to talk them out of having regular meetings and they wouldn't hear of it. So we are still meeting on a quarterly basis and we -- we still have a lot of work to do. We have done a number of things since the action learning lab, since the survey, and so these are -- we've actually revised our action plan to include these goals. Some of the things that we've completed in the last year, so we are continuing educational efforts at a variety of target audiences around the State. We work closely, as I mentioned one of our partners was involved with our Medicaid Bureau of Managed Care and we talked to their target audience, the contracted Medicaid HMOs to inform them about the newest practices. We emphasized the Dear Colleague letter that Dr. Gerberdean had developed and actually sent that out, modified it a little bit for our needs and sent that out to the data base that we used for our survey efforts.
Our ACOG partner, again, signed the cover letter or signed the letter along with our Department of Health pediatrician whom we work closely with.
We presented at a number of forums. We sent out a postcard notifying prenatal care providers of the guidelines that Margaret mentioned the model protocol of rapid delivery. Because of the onerous size of that document, we decided to mail a postcard that had the URL on it so providers would be aware of that new model protocol.
We are excited to have new data available next year from our PRAMS survey. The Phase V survey of the PRAMS project includes four questions regarding HIV counseling and testing practices, and so we will, you know, be able to evaluate this better in the future. Including, you know, were you tested, did you turn down the test and what were your reasons for turning down the test. So this will allow us to better evaluate what's going on in Utah.
We'd also like --we are really interested in the bacterial core surveillance record review that Margaret mentioned as a way of validating what's going on and would like to repeat our provider survey probably when we have the PRAMS ata available which won't be until the spring of 2006. So that's what we are doing in Utah.
I don't mean to imply blame on this slide, but just to raise awareness that this is a very preventable disease despite the fact that we only have a handful of cases in Utah, it's such a tragedy to allow that to occur when there's good treatment available.