Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
LOIS BLOEBAUM: Good morning. Thanks for being here. I’m going to talk to you this morning about HIV counseling and testing practices among Utah prenatal care providers. Before I get started, I’d like to acknowledge the colleagues that worked with me on this project from the University of Utah Health Sciences Center and the Utah Department of Health. Just a little bit of background on the topic, we know that undiagnosed HIV-positive females may unwittingly transfer the virus to their unborn children, and that according to the CDC, approximately 6000 to 7000 HIV-infected women gave birth in the U.S. in 2000 and an estimated 280 to 370 HIV-infected infants were born in 2000. Approximately 40 percent of these HIV-infected moms had not been diagnosed with HIV before labor and delivery.
We also know that prenatal care that includes HIV counseling and testing and antiretroviral treatment can prolong the lives of infected mothers and save their babies’ lives, and that when interventions are used, infected women have less than a two percent chance of delivering an HIV-infected infant. We know that without intervention, the risk is approximately 25 percent in the U.S. and that an approximate lifetime treatment cost is over $280 Million. With an estimated cost of perinatal prevention at $67.6 million, we can see it’s a very cost-effective screening therapy. Some background on the recommendations for HIV testing during prenatal care: in 1985, the Centers for Disease Control and the U.S. Public Health Service Guidelines were released. Those were revised in ’94 to ’95 to include universal testing and counseling, voluntary testing, and universal counseling. In 1998, the Institute of Medicine Report came out recommending universal testing with patient notification as a routine part of prenatal care. And in ’99, ACOG and the American Academy of Pediatrics supported that report and recommended the inclusion of counseling.
And most recently in 2001, the CDC and U.S. Public Health Service Guidelines updated their recommendations for all pregnant women to be tested as a routine part of prenatal care. Those revised guidelines are the focus of the study that we undertook, and they recommend HIV testing for all pregnant women. They permit flexibility in the consent process, as that was seen to be a barrier. They encourage health care providers to document consent and refusal and address the reasons for refusal. They support HIV prevention and referral through education during prenatal care. And lastly, they emphasize testing and treatment at labor and delivery for women who have not received prenatal testing. This project was sponsored by AMCHP and ACOG through an Action Learning Lab process.
The Action Learning Lab process entails facilitated strategic planning that was supported for the colleagues that I mentioned on the title slide to travel to Washington D.C. in the spring of 2003 and spend two days of intensive planning around the topic of perinatal HIV. What we realized during that two days is that we really didn’t know what was going on in Utah, and we needed to collect some baseline data. So the purpose of this study was to understand providers’ perspective and practices regarding HIV counseling and testing for pregnant women in Utah. The survey instrument was developed I wanted to-- I had a hyperlink here. I was going to just demonstrate it, but I can tell you about it just as easily. The survey instrument was developed from surveys that had previously been administered in Illinois, North Carolina, and Florida. They were kind enough to share their instruments with us, and the team compiled a two-page-- two-sided, one-page, I should say, survey of 18 questions from those three surveys.
We added a couple of questions, one on familiarity with the guidelines and one on providers’ feelings about mandatory testing in Utah. The survey was disseminated with a cover letter that was signed by our Deputy Director at the Department of Health, who is a pediatrician, and one of the Action Learning Lab team members, *Michael *Varner, who is a well known perinatologist in the community. We distributed the survey to 461 prenatal care providers during the period of January through March of 2003, and those prenatal care providers included obstetricians, family practice physicians, and certified nurse midwives. A total of 273 questionnaires were returned. That was using two mailings, which corresponded to a response rate of about 59 percent. We found that five percent of the providers surveyed no longer provided prenatal care, and they were excluded from the analysis. Our demographics indicated that over half of the providers were OB/GYNs, over a third were family practice physicians, and the remaining were CNMs.
The majority of respondents were male, and 70 percent reported practicing in urban areas. And these demographics roughly mirror the demographics of the provider population in Utah. So when we surveyed them about how many of their pregnant patients were offered HIV testing, 70 percent of the providers surveyed reported offering it to all women, 16 percent reported offering it to most, and 13 percent offered it just to some or none. Even though the majority of the providers offer HIV testing to all pregnant women, the proportion was higher among nurse midwives at 83 percent versus 70 percent among family practice providers and 68 percent among OBs. Females were more likely to offer the test than male providers. We investigated the informed consent process and found that 58 percent of the providers reported that all of their patients signed an informed consent, and 28 percent reported that none of their patients signed an informed consent.
We surveyed pre- and posttest counseling practices and found that 62 percent reported that most all of their pregnant patients received pretest counseling, however this percentage dropped to 51 percent with posttest counseling. We also investigated the content that was covered during pre- and posttest counseling. We found that in regards to pretest counseling, half or more of the respondents talked about why HIV testing is recommended, they addressed their patients’ concerns, and discussed the meaning of results confidentiality. However, they for the most part failed to discuss ways to prevent HIV and the availability of treatment. As far as posttest counseling is concerned, again, half or more of the providers discussed disclosure of the test results, answered questions, and discussed follow-up care but did not-- only about a third discussed ways to prevent transmission and the availability of treatment.
So it looks like our providers are missing these teachable moments. The survey also explored who usually provides the counseling and found that it was medically trained staff. Seventy-three percent of respondents reported that they documented consent for the testing in the medical record. 86 percent mentioned that they documented refusal. However, only 28 percent keep documentation of completion of pre- and post- test counseling. We then explored providers’ attitudes regarding HIV testing for pregnant women and we found that 70 percent of respondents recommend testing for all pregnant women, that only 34 percent would support mandatory testing for all pregnant women, and only 63 percent have policies and procedures in their practice setting.
We then explored the attitudes of providers in the probabilities of offering HIV testing to all pregnant patients, and we found that providers who support universal testing were six times more likely to offer it, which makes perfect sense, and that providers who have a policy in their practice setting are more than two times likely to offer it to their patients. Results indicated that 74 percent of surveyed providers were familiar with the guidelines; and of those that were familiar with the guidelines, 72 percent offered testing; and of the 26 percent that were unfamiliar with the guidelines, 66 percent offered testing. So in Utah, it doesn’t appear that familiarity with the guidance is a major issue. As most of you know, Utah is a very low incidence HIV state, and this is our challenge for encouraging providers to screen and test in an area where we don’t have a lot of cases. Thirteen percent of prenatal care providers that we surveyed, only 13 percent had identified or diagnosed a patient with HIV who-- during their pregnancy.
Nine percent had prescribed antiretroviral therapy, and only 16 percent had delivered an infant whose mother was infected, which is a good thing. We explored providers’ experience with diagnosing and treating women and asked, you know, what would they do if they were posed with a patient, and 51 percent stated that they would co-manage the care with another network provider. So this was a good thing. And when asked what type, they listed “infectious disease specialties.” Again, this, I think, is the data that will be most useful to us in that 30 percent of the providers who reported that they didn’t offer HIV testing listed low perceived risk among the population as their main reason. So even though they support universal testing, they know the guidelines, they still aren’t convinced that it can happen in Utah. Limited time during the prenatal care visit was cited, and concern about offending the patient was cited. So we still have some work to do about convincing our providers. Some of the limitations of this study: at the time of the survey, our most recent prenatal care provider database included 461.
This may exclude some providers as we don’t have-- our Division of Professional Licensing doesn’t designate licensed providers by specialty, so this is a database that we have to work hard to keep up to date, and interpretation of the results needs to take into account the relatively low response rate. So in conclusion, we need to emphasize among our providers that women will be missed if only their risk-based approach continues to be used. We need to encourage providers to implement policies and guidelines to facilitate universal testing and counseling, ensure that they are aware of the revised guidelines. We need to do some work about educating prenatal care providers about the opt-out approach to prenatal care testing and really encourage them to make use of the teachable moment for HIV prevention education to pregnant women. Thank you.