Date: 05/15/2003 Source: François Xavier Bagnoud Center at UMDNJ and AETC National Resource Center
Presenters: Carolyn K. Burr, EdD, RN; Elaine Gross, MSN, RNC; Netta Boudreaux, RN, BSN, ACRN; Ben T. Nash, MD and Connie Thompson, RN, BSN, ACRN Description: Welcome to this HIV and Pregnancy: Managing Mother and Baby training exchange. At this time I'd like to turn the call over to Dr. Carolyn Burr. DR. CAROLYN BURR:On behalf of the Francois-Xavier Bagnoud Center (FXB), National Pediatric and Family HIV Resource Center (NPHRC) and the AETC National Resource Center (NRC), we'd like to welcome you to our training exchange, HIV and Pregnancy: Managing Mother and Baby. We developed the Managing Mother and Baby curriculum with support from the Centers for Disease Control and Prevention, as part of their national initiative to further reduce perinatal HIV transmission. We've had a number of requests to share the curriculum with AETCs around the country and thought that a good way to do that would be to share not only the curriculum but also some lessons we've learned from implementing it. The goals of today's audio conference are to tell you about the project, to describe the model of using clinicians as trainers, and to provide an overview of the curriculum, as well as to share some insights and outcomes of the training project. My co-presenters today are: Elaine Gross, Nurse Educator with the FXB NPHRC at University of Medicine and Dentistry of New Jersey here in Newark; Connie Thompson, Case Manager and Clinical Trainer with the Delta AETC local performance site at the University of Mississippi Medical Center. Nita Boudreaux, Nurse Case Manager and Patient Educator for pregnant women at the University of Mississippi Medical Center. And Ben Nash, physician in pediatric infectious diseases at the University of Mississippi. Welcome to you, and thank you for being our presenters in the audio conference. I hope you have downloaded the training exchange slide set in Section 2 of the information on the NRC website and will follow along with us. Embedded in that set is a curriculum slide set, and you'll get a chance to hear about it as well. You should also download the curriculum overview in Section 1, which includes updated references. The faculty training slide set is in Section 3 by itself for you to use when you're presenting the TOTs. When you download it, be sure that you print out the PowerPoint presentation in its "notes" form so you'll have the speaker notes which are quite detailed and we think are a real important part of the curriculum. With these materials, you'll have the complete curriculum that we use when giving the Managing Mother and Baby curriculum as a faculty training. We'll start on Slide 3. As you know, the reduction of perinatal HIV transmission has been a bright spot in the HIV/AIDS epidemic. Since the results of PACTG076 were announced in 1994, the number of infants born with HIV infection has dropped by 80 percent in the United States. Increased knowledge about transmission has meant that the transmission rate for women receiving antiretroviral therapy is now at two percent or less. This project was started about four years ago because despite national recommendations from both professional and governmental bodies for universal HIV counseling and testing of pregnant women, prenatal counseling and testing has been unevenly implemented across the country. If you are a pregnant woman, where you live, how a provider assesses your risk, and particularly whether your provider recommends that you have an HIV test, influence whether or not you receive HIV testing during pregnancy. Slide 5 shows the project problem statement: the project was designed to explore provider barriers to prenatal counseling and testing and to look at how to best address those barriers. The project's goals (slide 6) are to increase providers' knowledge about HIV counseling and testing of pregnant women, and their understanding and strategies to reduce perinatal HIV transmission. With input from CDC, we selected four jurisdictions with low or uneven prenatal counseling and testing. We partnered with the AETC in that area and implemented a faculty training or train-the-trainer model. We asked our colleagues from Mississippi to join us this afternoon because the project was particularly successful in reaching its goals in that state. The project also provided ongoing support for faculty trainers and allowed us to evaluate the impact of the training. Slide 8 shows a schematic of how we hoped the project would unfold: that we would work with an AETC-in this case it was the Delta AETC and their local performance site in Mississippi; that together we would pull together a state advisory committee including both MCH and HIV providers; that they would help us identify trainers who would be part of the faculty training; that those folks would then ultimately train their colleagues and that we would reach down to influence the care provided to women with or at risk for HIV infection. One important ingredient of the project was involving key stakeholders, since we were concerned about both the HIV community and the maternal/child health community. Connie, would you share some of our experiences in involving local stakeholders? CONNIE THOMPSON:Absolutely, Carolyn. Just to get started, we're on slide 9, and that's involving those local stakeholders. Starting out with a little bit of the nitty-gritty, if you will, on the front line of that, part of that "how" is of course identifying those local point-of-contact persons, and essentially the newer trainees to have this contact is tremendously important. Also, supports of continuity with local resources in the availability, and then of course to have the AETC trainee database-what we have had, what we've done in the past, and to pull from that. Moving on to the "who" on that part is knowing who your collaborative HIV network is. Whether you're in a metro area, district, region of your state, or statewide is very important. Then getting your selective solicitation of those program presenters is very impactful trying to get started with a train-the-trainer. Again, looking at Ryan White funded care programs, and then also reaching out to solicit support from pharmaceutical companies to sponsor foods and meals has been very helpful in marketing events. "Why" doing that also has been tremendously beneficial as far as helping with ownership. A little bit of the buy-in, the marketing-you have more participation, more people to be involved, and again that marketing just kind of has a ripple effect as we bring in more persons to share that information to get out to the community and also to the state. Certainly this supports one of the objectives of this effort. This truly promotes team involvement and encourages distribution of the workload. Slide 10 responds to the "what". At this junction, we were seeking HIV experts to initiate the train-the-trainer concept. The base trainers included MCH and OB faculty from the University of Mississippi Medical Center Also, some community providers were targeted for trainers in this project. These are providers with the Ryan White Title III-funded programs that have an HIV patient caseload of 200 or more. They are mid-level treaters but do desire to have consultation support and networking in care and management of HIV+ women, especially during pregnancy. A few of these individuals were solicited to support the training aspect of this program and others were extended special invitations to attend the training session. Health Department was absolutely a must, promoting statewide public health care and management. Especially with their interest in perinatal issues! The state department of health's existing perinatal program was also
incorporated into the training in our state. That brought personal alignment with our needs and existing resources. With this involvement, representatives became members of the planning committee. Ryan White providers were a part of that as well to get started, and then we asked a representative from the March of Dimes to join the project. In initiating those trainings and trying to decide where to go and where to reach out first, we initially went with high incidence of HIV in the state of Mississippi, and then areas that might have had limited access or no access. The location of the HIV providers had to be somewhat convenient to them so that they weren't traveling long distances as they covered and traversed the state to the training sessions they would participate in as trainers. Options to team up with existing programs was a great benefit. We traveled to the coastal area to an existing statewide program. We then became an "on request" training event and also solicited to areas of the state which Dr. Nash felt could greatly benefit from the training content, networking, and resourcing A final comment on Slide 10 regarding involving local stake holders would include availability of presenters and who could team up with whom, as we connected and traveled the state. Such aspects as availability of room accommodation and convenience of attendees-whether they could have lead time to close clinic, reschedule, get persons to cover for them, and just giving courteous and professional recognition to them as they planned for their time off to come and be a part of the trainings and to participate, were all imperative to the success of the continued trainings. DR. CAROLYN BURR:Thanks, Connie. I mentioned that we use the faculty trainer model. Elaine, would you tell us why that model was chosen and how the curriculum was used, and guide us through the curriculum? ELAINE GROSS:Sure. I'm going to take a few minutes to talk about the faculty training-and I may refer to it as a TOT or a train-the-trainer-and then run through the slides, highlighting some key content issues in the curriculum that came up in many of the trainings. Slide 11, the faculty training model. We chose the train-the-trainer model because it's a very efficient way to get information to a large number of clinicians and to utilize local expertise to do this. The standardized curriculum has the advantage of helping you to control-and I put that in quotes-the information that is shared. It also helps to make it easy for those busy clinicians that you're hoping to recruit to be trainers for you. Probably the most important benefit is that when you leave, you will be leaving expertise behind in the local community. Slide 12...we did the training in a four-hour block. We planned to have the trainings, when we could, in very special locations -they had to be convenient. The slide set has a large didactic component, but we built in the maximum opportunity for interaction because the content is so complex, and we had access to expert faculty. We wanted the participants to be able to pick the brains, so to speak, of the local experts. We needed to prep speakers about the specific goals of the program [as a training of trainers] because it's so unique. We wanted them to use our slides, not theirs, and to be able to model-to know how important it was to model for the participants so that they could see training from the content and how to use it. Case studies were very important and very interactive. They were developed to get at the hard issues. They have the clinical content, but they certainly have the psychosocial issues built in. We offered extensive take-home materials as well. The content on Slide 13 includes HIV counseling and testing in pregnancy; there was a heavy focus on this because it is one of our primary goals. But the content of the training includes practical clinical content on managing the pregnant woman with HIV and not just reducing transmission to the baby. Content is based on the perinatal guidelines. Controversies in OB were discussed in didactic slides, and we covered those in the case studies. Adult learning strategies are used throughout the program. Slide 14 starts the slide set used in the curriculum, and slides 14 and 15 are introductory slides that talk about our support and our collaboration with the AETCs. Slide 16 outlines the scope of the epidemic and the reasons for the training. This is where you'll be able to add your local and state epidemiology slides to really bring it home to your audience. The last bullet focuses on the fact that babies are still being born with HIV infection every year in the U.S. Slides 17, 18 and 19 discuss the rate of perinatal transmission in the United States and in other developed countries both before and after 076. It also talks about where we are today with less than two percent transmission for women on HAART, when elective caesarean section is used as appropriate with post-exposure prophylaxis and formula feeding for the infant. Slide 18 talks about the U.S. Public Health Service (PHS) perinatal guidelines in response to 076 as well as the working group, which is ongoing, and where clinicians can access the most current guidelines. Slide 19 is the impact of the PHS guidelines for reducing perinatal transmission; the practice after the guidelines were published, including data from a four-state study looking at the percentage of women who were diagnosed offered intervention and their infants before and after the Guidelines were published. The slide also discusses perinatal transmission levels currently. Slide 20 is brand new and reflects the new PHS CDC recommendations for HIV screening for all pregnant women using the opt-out approach, as well as for rapid testing in labor and for infants whose mother's status is unknown. We have not had the opportunity to use this slide yet, but I imagine that that the new recommendations will start some heavy-duty discussions. It's important to stress that clinicians know the laws and policies that govern their actions in their own states because many states, as you know, have specific laws mandating informed consent for HIV testing. We thought it was really important to include the previous CDC recommendations for HIV screening in pregnancy. The notes for these slides are extensive. Slides 21 through 29 address HIV counseling and testing for all pregnant women and the OB provider's role. I'm going to go through some of them. Our aim in this program was to increase the provider's confidence and comfort in HIV testing in pregnancy and their role, and to address why risk-based testing is not a good idea. That's still going on in many parts of the country. The speaker notes for these slides include information about why it's so important for providers to recommend HIV testing and look at women's understanding and knowledge about HIV transmission, particularly in pregnancy. Slide 22. For those places where informed consent is still mandated by law, this slide discusses the provider's role to document consent; to approach the woman again when she refuses testing, and to find out what her reason is for not testing; to offer the test again for clinical indications. Because our audience is primarily obstetricians and women's healthcare providers in pregnancy, we wanted to make sure they knew if they are not able to provide extensive counseling for risk behavior reduction, to know where in the community they can find this so they can refer women to appropriate services. Slide 23-25, include messages that the providers can use in counseling or educating pregnant women about HIV testing. The messages on slides 24 and 25 came from a very effective campaign in New Hampshire and Vermont that took these simple messages, laminated them and put them on the back of bathroom doors in OB clinics and doctors' offices. They found this is a very good simple way of providing HIV education to pregnant women because you always have to use the restroom when you're in an OB/Gyn's office. Slides 26 and 27 give practical help for the providers on what to say and what to do when the HIV test comes back, whether it's positive or negative. We spend a fair amount of time on these slides. Slides 28 and 29 reinforce the importance of providers strongly recommending HIV testing as a routine for all pregnant women and why this is so important. The message is, as the Institute of Medicine reported, when women are given this information they do make decisions to accept HIV testing. Slide 29, Carolyn alluded to the content of this slide - barriers, who agrees to get tested and why, and the geographical areas that were studied. This slide content is from the Royce et al article in the American Journal of Public Health. It reinforces the idea that when providers strongly recommend testing, women do agree to get tested. I believe even with the new CDC recommendations for opt-out testing, OB providers need to be comfortable and able to educate and discuss HIV with their patients because they will certainly have to do this when the test comes back positive. Slide 30 covers the details of HIV-antibody testing. The extensive speaker notes for this slide also discuss the three FDA-approved rapid tests: the SUDS or OraQuick & Reveal. This slide also gives you a chance to discuss the use of rapid testing for women who present in labor with unknown or undocumented HIV status. Slides 31 through 35. I'll go through some of them specifically, discuss what is presently known-the science of perinatal transmission-including some studies on viral load and transmission. Most of you are going to be very familiar with these studies. This content, from the management point of view for the training, is generally presented by an OB with experience in the care of pregnant women with HIV. We wanted the trainers to actually hear this content presented by an expert who is very comfortable with it. Slide 32 is the recommendation against breastfeeding for HIV-infected women in the U.S. In addition , it raises the point that women who are considering breastfeeding should know their HIV status. Slide 33 discusses factors influencing perinatal transmission. We spend a fair amount of time covering the specifics of this content for this audience. Some of these slides are going to be very familiar to you. Slide 34 is the HIV viral load data from WITS, the Women and Infants Transmission Study, particularly the transmission risks increasing with high viral load. Slide 35 is the follow-up and viral load data from the 076 study, again reinforcing the role of high viral load levels and transmission. However, this particular slide points out that there's no level below which there was no risk for transmission and that the recommendations continue to be to initiate maternal ZDV regardless of viral load or CD4 count. Slide 36 is a transition slide to other studies related to perinatal transmission, and here's the classic 076 study slide( slide 37). There are extensive speaker notes to help those participants with the background of all of these studies. Slide 38 is the graph representing the reduction in perinatal transmission from 076. Slide 39 is the follow-up of the uninfected infants showing that they're growing and developing well. This slide is where we introduce the issue about potential mitochondrial toxicity and talk about the fact that it has not been seen in the large U.S. cohort. Follow-up of the women in 076, in slide 40, reports that there was no difference in the women on placebo versus ZDV as far as progression to AIDS or death. Slide 41 is a synopsis of short course ARV therapy for reducing perinatal transmission from the developing world. The slide outlines the different options that are part of the perinatal guidelines for reducing intrapartum transmission. Slide 42 shows HIV transmission related to real life situations when only parts of the three-part ZDV regimen were given. This is from the New York cohort from Nancy Wade. We use this slide to reinforce the message that it's not too late if a woman has not had antepartum prenatal treatment -- that the intrapartum and the newborn prophylaxis are equally as important. The next series of slides are on the management of ARVs in pregnancy. This content is usually presented by an expert in adult HIV management. We found that the most ideal presenter is a provider who is able to model collaboration with a woman's OB provider, both during and after the pregnancy. From the perspective of planning the training, it generally takes some time and some effort to find the ideal presenter. It's important to work with your local collaborators on identifying who this ideal candidate might be. Slide 44 outlines the goals of antiretroviral therapy. Slide 45 has a chart of the current adult ARV guidelines. The discussion around this particular slide focuses on how pregnant women differ, with the recommendations for ARV combination therapy for all pregnant women with viral loads over 1,000. The next two slides, 46 and 47, present an overview of HIV and ARV management in pregnancy, with some management guidelines. Slide 46 is the overview; Slide 47 presents the concepts that you want to use - optimal ARV for the women - you want to add ZDV for reducing perinatal transmission, reducing other risk factors, counseling on caesarean section - but support the woman's decision-making and accept her refusal of ARV or ZDV without denying her care. Slide 48 is Scenario 1 from the perinatal guidelines. For the faculty training we need to do a little bit of juggling [moving the order of the slides] with the content. When the trainers use the slide set, they do it straight through, but when we're doing a train-the-trainer, we have to move things around because it makes more sense to do so. Generally, for the faculty training, we take this slide and give it back to the obstetrician because it's very likely that it is the obstetrician that is going to be managing the woman in pregnancy who has just been diagnosed with HIV through screening. The scenario of the woman on no antiretroviral therapy may likely be happening in the OB's office, and he is going to be the one to introduce this idea. He or she may be most comfortable with it. This may be the slide where the speaker discusses which ARVs to start and which ones to avoid, such as efavirenz. They may also choose to discuss the
risk of mitochondrial toxicity in pregnancy with NRTIs, specifically ddI and d4t. Clinical Scenario 2, slide 49, we usually give this back to the HIV provider who's caring for the women who's on ARVs and gets pregnant. This is most likely the scenario that is seen in the HIV expert's office. Slide 50, Scenario 3, generally is discussed by the OB or family practice doc who's managing the pregnancy. There are not too many ID docs that want to manage labor in their patients, although they will probably be very comfortable in recommending those choices from the guidelines about ARV drugs to reduce transmission intrapartum and for the baby. Slide 51, Scenario 4, is management of the infant, and anyone who feels comfortable can handle this one-the OB or the HIV expert-but it's important to know your community pediatric resources for diagnostic testing and follow-up. Slide 52 is a good overall summary of initial assessment and how to proceed in the care of a woman with HIV who is pregnant. Slides 53 and 54 discuss follow-up monitoring and changing ARVs during pregnancy. Both slides illustrate how complex this care is and the need for communication and collaboration between OB and HIV providers; this is not easy work for either of them. Slide 54 discusses changing ARVs during pregnancy and how one goes about doing that. Slides 55 to 59 are generally OB content areas because they cover caesarean section -- a very controversial issue -- premature labor, postpartum care and follow-up evaluations and care of the baby. The caesarean section slide causes quite a bit of discussion. We had a training last evening and we spent more time discussing caesareans than anything else. The recommendations and the guidelines say if the woman is at or near term, and her viral load is under 1,000, she can have a vaginal delivery based on her input and her desires on her method of delivery. Slide 56 discusses pre-term labor. Initially there were some data that ARV therapy in pregnancy increased the risk of premature birth, but an analysis of seven large studies in the U.S. found no relationship between combination ARV therapy and premature birth, no difference in the women who were not on ARVs or monotherapy with premature birth or low birth weight babies. They did see some very low birth weight babies for women who were on protease inhibitors. The other message from this slide is that providers need to educate their patients about the signs of premature labor and why it's important to get into care early. Slide 57 gives information about the Antiretroviral Pregnancy Registry, which we want the trainers to introduce to their community providers. Slides 58 and 59 discuss comprehensive care of the woman postpartum, what her needs are, and evaluation and follow-up of the infant -- slide 59. The last six slides in the curriculum are the case studies. These are modeled on the clinical scenarios from the perinatal guidelines. We have added complex issues, particularly medical and psychosocial, to make them real and to get group interaction and discussion. In the training, specific cases are selected for the audience. You can't do them all, so we usually select one or two for discussion. We have the faculty panel up front, but we present the case to the participants and ask how they would manage the issues the case presents. The faculty presenters get to comment, but generally want the audience to share their experiences. This takes some preparation of the faculty. I'm going to talk about Case 4, slide 64. This is a woman, Heather, who is at 14 weeks gestation and she's been HIV-positive for five years. She's stage B2 with mild dysplasia. Her CD4 count is 220; her viral load is 5,000. She's on ZDV, ddI and nelfenavir, and she's anemic. Her husband has AIDS, and this is a planned pregnancy, The office staff is up in arms because they can't understand how this woman and her husband could be so irresponsible for having a baby. The questions for the participants are generally the four outlined on the slide. Let's deal with medical management of a woman who has a borderline CD4 count and a viral load, despite treatment, of 5,000, clinical issues such as anemia-you don't want a pregnant woman at 14 weeks of gestation to start out being anemic. The other issue that we have to deal with-and this raises a lot of discussion-is the reproductive choice issue. This is an issue that doesn't go away. It
keeps surfacing even with combination antiretroviral therapy and HAART and better outcomes and low perinatal transmission. We particularly like this case because it gets at all the issues. How would you manage her antiretroviral therapy? What are the other recommendations for her care? And the bottom line is how are you going to deal with the office staff that have these strong feelings? If Ben or Nita would like to comment...I know they have found this to be one of their favorite cases as well, and if you have any comments you want to add, please feel free to comment. DR. BEN NASH:You usually have to build in a minute or two to let the rumblings die down after you give this initial presentation. It takes a while to get the crowd back. ELAINE GROSS:Good advice. That is the end of this particular segment. I know it was very fast and it was very dense, but I will be happy to take specific questions on the content or any other details of the curriculum during the Q&A time. Thank you. DR. CAROLYN BURR:Thanks, Elaine. Just jot down your questions and you will be on an open mike when we get to the question and answer part. Moving on to slide 67, one of the things we thought was essential to this project was to have ongoing support for faculty trainers, and a piece of that we did through the NRC. Through the CDC grant, we were able to provide a portion of that ongoing support. We updated the slide set and the speaker notes as the PHS guidelines changed and made those updates available online. In the original set of materials, we also included learning objectives for the seminars that the faculty trainers would be giving, along with a bibliography and reprints of selected references. They also had evaluation tools, and they got feedback on the evaluation. Our thinking was that the simpler we made it for clinicians to be trainers, the more willing they'd be to take on that additional task in their busy lives. We also made available
provider education materials and consumer educational materials that either we provided or that the AETC reprinted for us that the trainers could take with them when they were doing training. Through the grant, we were also able to provide a small speaker fee when the faculty trainers presented this seminar, but most of the ongoing support was provided by the AETC. Connie, would you talk with us a bit about that? CONNIE THOMPSON:Certainly. Slide 68 refers to the support for the faculty trainers in Delta Region AETC. In the beginning, it was extremely beneficial that CMEs be offered at the trainings. I would also extend at this time a special appreciation to Dr. Burr and the continuing educational staff for their support in providing this incentive. Our participation with registration and program evaluation gave immediate feedback to the presenters to support continuous improvements of their format, content, etc. Also, the ready-made handout materials were extremely beneficial. We had a sample packet that we gave to them so that they might develop their own original/copies. Some of the trainers that we did cultivate through the state had very limited access to copying, compiling, preparing packets, etc., so we did that for them and mailed to them. Some of them, like the program here with Dr. Nash and with Nita Boudreaux, were very smooth as they were able to
collate their packets, etc. However, as previously mentioned, others needed a great deal more to support their readiness for trainings. Initially we did go with the newly trained trainers, and then they were on their own. The clinicians' support tools, such as the yellow laminated pocket cards, have been a real hot item. They've been requested and we've shared that, and for clinicians to be able to carry that information, which also included local information for the state of Mississippi (contact persons, phone numbers, and emails), was a tremendous asset in networking and continued collaborative efforts for consultation. AETC also supported in most instances AV equipment and supplies, and that I believe this was a tremendous support in reducing any technology stressors. Also, post-program communication, encouragement, and networking from your center and our office has helped to promote the development of comfortable and competent trainers. Slide 69 This is continuing in discussion of support for faculty trainers. The availability of the local contact person I think has been probably one of the main reassuring, reaffirming, pivotal points related to this project. The fact that 'rural area' trainers were not alone and had easy access to contact persons in the local AETC sites was of tremendous sustaining value. Again, what you said, Carolyn, about the simplicity. Checklists support consistency and quality of each training program and maintain an easy manner to assure completeness of materials, etc. We also followed with our personal information forms to complete by each participant. This facilitated our site in tracking these events as a Level II offering. A faculty trainers directory was beneficial as most trainers were unable to gift the total time required for the training and it was more enjoyable to share with a co-presenter. As you had mentioned earlier, Carolyn, the PowerPoint updates of guidelines and changes from U.S. Public Health Service, those guidelines, and for you all to continue to update and keep the persons abreast; the trainers did not have to do this. That was a wonderful feature and a great asset for you all to do that. Individualizing to trainers' area and the needs was very good, very helpful to see where they were, what part of the state or the metro area, statistics, etc. It was very helpful for the presenters to know who their attendees would be, if it would be a small group, and such. This really supported a more personal time for the participants with the trainers. Of course the added bonus was the honorarium that the grant supported, not only to the individual trainers willing to travel but also in support for the project as a whole. DR. CAROLYN BURR:Thanks, Connie. Moving on to slide 70, I think you can sense that our faculty trainers did a really fabulous job. They gave 24 seminars over two years, often, as Connie said, working as multidisciplinary teams. About half the time, somebody from the medical center was a part of that team, but the other half of the time they were community-based folks who did the training, again as teams. All of them, in those 24 seminars, reached about 400 providers across the state of Mississippi. So we're hoping that Ben and Nita will tell us a little bit about their experiences as faculty trainers and some of the things from your perspective that made the project. DR. BEN NASH:Thank you, Carolyn. Just a little background about our team here at the University. Hannah Gay is our pediatrician in the ID division, and she's been on board since before 076 and has seen that come and go. Nita is our case manager, patient educator, and she's been here about four years. I've been on board a little over two years. Initially, Hannah and Nita completed the initial train-the-trainer series and Nita was involved in several follow-up training sessions around the state, essentially in leading the case study discussions. During those, she could present details about our local treatment protocols and our local contact information. After I came on board and began getting consultations from around the state, we would offer this workshop and follow-up to that. Of course Delta's CME support increased the attraction of the courses. We would offer a one-hour CME usually around lunch or dinner, or what we would consider our full course of a three-hour program, again centered around a meal. The choices or options for local catering would be discussed, and then Nita would arrange some final communication between a pharmaceutical company rep and the local site person. Then, as we've talked about already, just the support of the NPHRC with the presentation folders and the materials, the honorarium and travel subsidies and the program evaluation forms, and Delta's support with the audiovisual equipment, the PowerPoint equipment, any other needed support, and of course CME forms. Personally, I found the program to always have kind of a "teaching moment" for me personally presenting it, and the assistance and keeping up with the changes in the guideline from presenting it frequently I think has helped me be a better clinician and a better consultant. DR. CAROLYN BURR:Thank you, Ben. Moving on to slide 71. We had specific goals as we went into this project, but we also achieved some things that we hadn't necessarily expected. I'm going to mention a few, and then I'm going to turn back to Nita and Ben and ask them to comment. One of the things we saw, not just in Mississippi but in other places, was increased visibility of the HIV specialists as well as enhanced collaboration between those community providers and the folks in the referral centers, and as a result, more referrals. To continue on, slide 72, that there was networking among the HIV providers as well and the chance to use the TOT in conjunction with other professional meetings. We did one in Mississippi in conjunction with an annual OB meeting, so we were able to get to some folks that probably wouldn't have come if it was just a freestanding HIV and OB meeting; but because they were there already, they came to the train-the-trainer. Nita and Ben, do you have some other things you have seen as unexpected benefits? DR. BEN NASH:There were some programs that we developed by promotion to different groups, primarily hospital-based physicians. Perhaps just subjectively, in terms of network building, that probably was not as effective from our standpoint, but it still was effective in increasing our visibility and leaving our contact information, which was one of our prime directives. Our basic clinical contacts, of course, are in an academic setting, and so that leads us to numerous opportunities with resident conferences, grand round presentations in OB, pediatrics and family medicine, The academic cycle means there's always a new group coming on board that needs a current update on testing and treatment protocols. The majority of pregnancies managed in the Public Health Department clinics are all referred into this academic center, so that gives us a public health connection as well. We developed a distance consultation service for physicians and nurse practitioners around the state where they
manage the obstetrical care locally and then we co-manage the HIV management with them after that. Nita? NITA BOUDREAUX:I think that collaboration came from us doing this program and our visibility; I think that led to OBs throughout the state having more of a comfort level with following them locally in consultation with us that was not there before doing this program. Then our presentation of the program itself, adding specific local protocols and contact information to the slide set, and then, as Connie talked about, the pocket cards with Mississippi-specific contact information. Those things increased our visibility tremendously throughout our state, and that visibility has helped us to identify the vast majority of pregnant women with HIV infection before they deliver. Therefore, we've been able to intervene with ARV therapy directly or in consultation and to continue decreasing our perinatal transmission rate as a result. DR. CAROLYN BURR:Great, thank you. I'm going to take a minute to talk about the pocket cards because we've alluded to them, and I think probably many of you in the audience have seen them. Just for those of you who haven't, it's a pocket-sized card that fits in a lab coat pocket, that has sort of the Cliff Notes of the PHS guidelines on them. So they're all there, but they're in very tiny print, and they leave enough room on the back to put the local contacts. We have a set of them that have national contacts on them, but then we've printed them for a number of regions and a number of AETCs that have local contact information on it. So if you have that card in your pocket, you not only know the dose you're supposed to prescribe, but you know who you can call in your region to help you manage this mom if she shows up in labor and hasn't been treated or you've got a baby that you need to treat. Those referrals are right there in your pocket. We've printed about 40,000, so if you haven't
seen one it isn't because we haven't tried, but we'd be glad to share those with you. You can send us an email; we'd be glad to send you one. They're not terribly expensive to print, and even customizing them, because we do them in such large quantity, is not very hard. Because of the CDC funding we were able to put an evaluation component into this project. We looked first at knowledge gains, not only of the faculty trainers whom we train directly but of the trainees, the folks that the faculty trainers trained. We looked at their own perceptions of their change in knowledge from before the training to after the training, and then we were able also to look at change in practice and knowledge six months post-training for the faculty trainers and at whether the seminars reached the target audiences that we'd hoped. On slide 74 you'll see a graphic of the knowledge change of the participants in the faculty workshops. We got evaluations back from about 60 of those folks immediately after the training, and for all nine of the objectives that we covered in that four-hour program, there was a significant increase in knowledge from pre-program to post-program for each of those areas. One concern when you're doing a training of trainers or a faculty trainer approach, is whether the training message changes and whether it continues to be effective when the trainings are done by the faculty trainers, when they're doing it on their own. What we found from our follow-up of actually (there's a typo on there) 189 trainees-of about 400 that were trained, we got paperwork back on about half of them-again, there were significant increases in knowledge in the six areas that those seminars targeted. So we were pleased to see that using the curriculum and using our trainers, that knowledge stayed very well. We also were able to reach the providers we intended to target. About half of the folks who came to the seminars were nurses. Our numbers are a little off on the pie chart; in fact, about 20 percent were physicians, 15 percent were advanced practice or certified nurse midwives, seven percent were social workers, and the remainder were other healthcare providers. Demographically, about 45 percent of the participants worked in hospitals, 15 percent were in private practice-I think mostly those were physicians and nurse midwives, and another 28 percent were in community health or public health settings. So we felt like we really got to the people that we intended. We were able to follow-up with our faculty trainers six months after their initial training, and we found that they reported increased knowledge about HIV and pregnancy, and more than 90 percent of them thought the workshop had had a positive impact on their practice with pregnant women with and at risk for HIV infection. Ninety percent of the respondents agreed or strongly agreed that they were more knowledgeable when they discussed HIV testing with a pregnant woman and that they had a better understanding of the PHS guidelines. More than 80 percent of them said they were more likely to discuss HIV testing with a pregnant woman, that they knew more about diagnostic tests, had a better understanding of psychosocial and ethical issues and, probably most important, were more familiar with resources for HIV care in their state. About three-quarters of them continued to use the written materials from the training as a resource. On slide 78 you'll see that we also collected some qualitative data. We asked them how training influenced the care they provide pregnant women. What they told us was that they were more aggressive and extensive in the counseling they offered, that they had expanded the testing they did. They felt more knowledgeable about antiretroviral therapies in pregnancy. They were more confident in their role around those issues, and they were more willing to consult with and educate other providers. So one of our goals of the project was for it to be sustainable over the long haul. Connie, would you talk with us a little bit about how that's going? CONNIE THOMPSON:Sure, Carolyn, thanks. As an AETC, this really fit right into our goals and the funding availability that we have. We were able to initiate enhanced course work of this clinical topic into an already existing 2-day HIV Comprehensive Clinical Course that we offer three times a year. We also developed a one hour and a three hour CME course offering specific to women and HIV which has been appreciated statewide. Another is development of a four-hour CME clinical preceptorship training with Dr. Nash, Dr. Hannah Gay, or Dr. April Palmer, all of whom work with HIV+ either adolescents, pregnant ladies, or pediatrics with adolescents. They are willing to work with providers who want to come in and work with them in the clinic with clients that they are seeing to get a little more comfort in just collaborative efforts, consultation with these providers. This program is now in existence . In conclusion, we look forward to a continued working relationship with you all in the NRC.
DR. CAROLYN BURR:Thanks, Connie. Okay, we're winding down here. We have felt that the key elements for success, as you can hear from what we're saying today, is the local leadership, both from HIV clinicians and from the AIDS educators, that that support was really critical to making this work. The ongoing collaboration between HIV and maternal child health providers was essential for this to be sustainable over the long haul, as well as the involvement of public and private leadership in OB, HIV and MCH communities. So in summary, the faculty training model we believe offers an effective way to increase knowledge and influence practice. It builds on expertise in the community, it increases recognition of local HIV experts, it improves networking among primary and specialty providers. And the long-term sustainability requires a commitment from the stakeholders, and certainly in Mississippi we've really had that and are appreciative for that. I want to refer you, for more information on perinatal HIV transmission and interruption of transmission, to a new website that the Francois-Xavier Bagnoud Center is doing in collaboration with the University of California San Francisco's Center for HIV Information. It is www.womenchildrenhiv.org. You'll find a lot of great information there-some material that we've done more recently on rapid testing in labor and lots of national and international material. It's brand new-it has not had an official launch yet so you'll probably get an email launching it-but for right now you can get to it and have a look around. Q&AWe've gotten some email questions about getting to the speaker notes for the curriculum. You have to "save as", and when you save it as and put it on your own computer then you can open it up as a PowerPoint presentation and you can get to the speaker notes. The title pages don't have speaker notes, so you have to get about two or three slides in before you get to speaker notes. The next question comes from Siona Kalinda of AVRC. Please go ahead. Question from Siona Kalinda Q: Hi, I'm from Uganda. I'm a pediatrician, and I was inquiring if there have been any studies on nevirapine because it's what we are using. Does AZT have any advantages over nevirapine, if there have been studies? A: Dr. Nash, you want to take that? A: In terms of what we know of the short course therapy, of course that's usually resource-driven. We use the short course nevirapine, just a single dose in labor, a single dose for a baby in situations where the mother has not been on treatment. In terms of a comparison, I'm not sure I really follow the question. Can you tell me what else you're looking for? Q: I was just wondering because we're using nevirapine because that's what we're giving as 8, but I was wondering if the advantages that AZT has over nevirapine, if there's been studies done on this. A: Certainly the study of the long course, which is 076 regimen, where women took AZT during pregnancy, they took it IV during labor and delivery, and the baby took it for six weeks. The transmission rate there was about 7 percent, and of the various interventions that's the lowest one. So when you're comparing a long course to a shorter course, there is an advantage. If you're only using short course, the U.S. guidelines don't really rank those. I think probably many people in the United States use IV AZT and the baby, six weeks of AZT, but there are also a lot of people using nevirapine for short course intervention if mom comes in labor and she hasn't been treated. Those are really not ranked in the U.S. guidelines; they really are all seen as equal. The next question comes from Theresa Busch with Wyoming AETC. Please go ahead. Question from Theresa Busch Q: I was wondering if I heard this right that you're suggesting that you do routine testing on all pregnant women? A: I believe it was April 22nd, there was a "dear colleague" from CDC that went to many people in the HIV community as well as women's healthcare providers recommending what the CDC is calling opt-out counseling and testing, which basically is women are going to be counseled that an HIV test is going to be done unless they wish it not to be done, which is opt-out, as part of prenatal care. If you're interested in getting more information or the transmission itself or the letter itself, if you could email us we'll be happy to send it to you. And just to follow up on that, the previous recommendations from the public health service and also from ACOG and from American Academy of Pediatrics have been that all pregnant women be offered HIV counseling and that testing would be recommended. The next question comes from Garrett Colmorgan with the Pennsylvania Mid-Atlantic AETC. Question from Garrett ColmorganQ: I have actually a comment and two questions if you can tolerate that. My comment is that one of your slides brought up something that I don't think we normally think about when we counsel patients upfront when they're pregnant, about breastfeeding. That's something that we have great enthusiasm for, and we forget that we don't want women breastfeeding who are HIV-infected. I think it might be interesting or important to include that as part of your pregnancy counseling, and I don't think that everybody does that. It made me think about it, but you don't actually say to do it so you may want to include that somewhere further up in how you counsel patients. The other question is, I have to give a lecture tomorrow on HIV in pregnancy. You made the point that we should use this slide set instead of something else, so why should I adopt your slide set for my presentation tomorrow? A: There are, many folks that have been doing presentations around these issues. We developed this curriculum initially in New Jersey to help us educate our OB community. We're talking some past history here-I think 1996 or 1997 we started this process locally. Lots of folks have slides and presentations about reducing perinatal transmission and managing HIV in pregnancy. This is really meant as a tool for folks that need it, that haven't done that, that find it useful. I think the other plus that you'd find with it is the speaker notes; the speaker notes really guide you through it. While an experienced trainer I think can do it from your own slides, if you're asking clinicians to do it, having that extra backup of the speaker notes I think is helpful to them. Q: Okay. Actually, I like your slides, I have to tell you they look really good. The last question is, the real evaluation of this project is going to be, is there a difference in the number of people getting counseling, and have you been able to show that? The things that you have on there as being good things are good things, but they're sort of platitudes. The real issue is are more people getting counseled, because once they get counseled they're sitting there with a hot potato of a positive test. Do you have data that shows that? A: We have not specifically collected it. I don't know what the sense from our Mississippi colleagues is and whether they think that's being collected there. Q: Okay. That's probably your most important piece of information with regard to effectiveness of this training. A: Ben and Nita, do you have any sense for that? Whether more people are getting counseled and tested, more women in Mississippi? A: About the only number I think I could offer would be looking at having identified women with HIV infection prior to delivery. The last complete year I think that we have on hand is that of 72 deliveries statewide we had identified 68 prior to delivery. That was just a year or two ago; I think that was the '01 data. In terms of identifying infection, I think we're doing that. Whether everyone is being tested, I can't really say. A: All of the seminars that I have been a part of throughout the state, I have not talked...there have been no providers that I have been with OB-wise that have not already been including that before they came to the HIV and pregnancy program. I think that's just been the standard of care for a few years among OB doctors in our state. We don't have to...ours isn't more of an opt-out program without written consent, and it's just part of the prenatal panel to include an HIV test. That's been basically standard of care among the OB practitioners and family practitioners in our state. A: We have seen some data from the Health Department that show that more women are identified as HIV-positive during pregnancy rather than at the time of delivery than a few years ago, so we're hoping that we're part of the reason for that too. A: The Health Department includes it as part of their prenatal care-an HIV test. The next question comes from Ingrid Hanson with the Harris County Hospital District, Houston. Please go ahead. Question from Ingrid Hanson Q: Hi, this is actually Yvette Peters with Ingrid Hanson here in Houston at the Hospital District. This is more of a comment versus a question for you. The curriculum is wonderful, but I was wondering if anyone had thought about adding the importance of mothers remaining on therapy once they've delivered their children. Here in Houston as an NP we're seeing a lot of examples where moms tend to stop medications once they've delivered fine, and they still need to remain on therapy. Thanks. The next question comes from Rodji Rao of South Carolina. Please go ahead. Question from Rodji Rao Q: I have a question about the OB physicians. Did you find in Mississippi that the OB physicians were more apt to start HIV therapy themselves, or were they referring them to HIV specialists? A: For the most part they were all referred to the University centrally. I don't know of any that provided primary management during pregnancy. A: I think that's been one of the major benefits of this HIV and pregnancy program the majority was coming here to the University, that we were following them for their pregnancy, for the OB care and the HIV care, and now there are more OB providers because of this program being offered and them having a comfort level with especially Dr. Nash and the consultation they can have with him that they are now following and delivery locally for the prenatal care in consultation with him for the HIV care. That's been a real plus for the ladies not to have to travel so far throughout their pregnancy for all their prenatal visits and be able to be delivered locally. A: Let me just interject. We had an email question asking about slide 19, whether there were any additional data assessing the impact of the perinatal guidelines, the implementation of the perinatal guidelines on perinatal transmission rates. That is getting to be old data; I was feeling that as we put this together today. I have not seen new data. It may be being collected, but I've not seen it published. Another question from Amy Kendrick in San Francisco about references for the speaker notes. One thing to remember about the slide set is that it's based pretty tightly on the PHS guidelines. So most of the time, if it's alleged in the speaker notes you can find the backup for it in the guidelines. Sometimes where we've used other references they are referenced directly in the speaker notes. Also attached in the overview section of the curriculum is a very detailed reference list that we just updated for this call, so I think
you'll find the most current things. If there's something particular-you want to read more about mitochondrial toxicity or whatever-you can find that in the reference list. DR. CAROLYN BURR:I have a question that I want to ask our colleagues in Mississippi. What happened when the local practice was somewhat different from what the PHS guidelines recommend? I think one of those big areas is around caesarean section. How did you all handle that? DR. BEN NASH:I think C-section delivery as a planned event for all patients is the issue. At that particular presentation we did not have very many OB providers so it really didn't create as much of an issue for that particular audience. Again, I think it's just trying to keep everyone on the same page to try to know what the most current stance is. CONNIE THOMPSON:Carolyn, can I say something? I was just going to share something. Sometimes in parts of the state I think there's been...because the contact and all was established with Dr. Nash and Nita being contact persons to be called, there were times when they were called and then there was consultation that was shared between the providers locally in very small rural areas who may or may not have attended the programs, but because they heard about, saw or received contact, and when they shared clinical information or review of consultation it was very obvious that there was a need to share information about the U.S. Public Health guidelines and they needed contact from Dr. Nash and from Nita. So at that time, you're asking what did they do, there were direct contacts and often there was an immediate sharing of collaborative information as in a consultation, for recommendations and/or suggestions of what they might do at that time, that local provider, and then immediate kind of
response was made to go and do an on-site training for that particular clinic and providers, nursing and other healthcare support care workers. Because a lot of that-just acknowledging that there was a point of contact person as a clinical-and we've heard that too. We were also a point, and so when we were aware of that or when we did chart abstracting and some of the Title III Ryan White funded clinical community health centers, and it was obvious that there were opportunities for clinical trainings, and that's exactly what happened! ELAINE GROSS:One of the things I wanted to mention was unexpected consequences that came up in one or two of our trainings in Mississippi. That is, when we did this train-the-trainer, in the audience oftentimes there would be an obstetrical provider-and these are in some small communities, or a pediatrician or a family practice physician who was unknown to folks as actually practicing in that community. It turned out many of them had done their training in high HIV incidence areas and were very comfortable providing care for HIV-infected pregnant women or their children. They were kind of out there, and no one knew about who they were until they came to the training where they spoke up and said, "We'd be willing to get referrals. Please send your pregnant women to us; we'll manage them during the pregnancy." We thought that was really a splendid unexpected outcome for the training. DR. CAROLYN BURR:We're getting emails about pocket cards, and we will send you some samples. They come in two varieties. The national variety is white, They can be personalized, and those we'd have to print. That section which will come as a national card can include local resources instead. It also should be downloadable from the www.aidsetc.org. You're going to download it onto regular paper so it misses its laminated nature, but you'll get a chance to see it and see what the content looks like. Our thanks to all of you. It's been really great, and we particularly thank our colleagues in Mississippi for their participation with us and the AETC National Resource Center for co-sponsoring this with us, and we look forward to working with all of you in the future. |