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Mothers on the margins: implications for eradicating perinatal HIV
Association between antiretroviral therapy, (including HAART) during pregnancy and maternal and obstetric outcomes
Impact of provider persistence in achieving universal HIV screening in prenatal care in the United States
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Pregnant Women and HIV

Mothers on the margins: implications for eradicating perinatal HIV

Study Question(s): What can we learn from HIV-positive mothers who knew their HIV status but gave birth after little or no prenatal care? What are their ideas on possible strategies to eradicate perinatal HIV transmission?

Study Participants: The sample was drawn from an Illinois Department of Children and Family Services (DCFS) database of 1104 HIV-positive women with children in protective services between 1989 and 2001. Of these, 32 women knew their HIV-positive status and gave birth to at least two children after 1997 (when zidovudine was the widely implemented as standard of care). Twelve were accessible and consented to participate. Three others, currently pregnant, also participated. Fifteen interviews were completed. The 15 women had given birth to 78 children (9 HIV-infected), fathered by 62 men.

Study Methods:

dotA proxy interviewer (not the authors) confidentially interviewed each of the women for one to two hours. Neither the interviewer nor the authors knew the participant's identity.
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dotThe areas of inquiry and the nature of the questions for this qualitative study were derived from a feminist theoretical perspective which asserts that respondents are expert informants on their own life experiences, thought and attitudes. Three main topic areas were explored with key probe questions:
  1. motivation, behaviors and attitudes about contraception, pregnancy, and childbearing;

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  3. experiences with the health care and child welfare system; and

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  5. ideas about strategies for eradicating perinatal HIV transmission.

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Study Findings:

dotThe fifteen respondents were predominantly young (mean age 28 years), African American, undereducated, unemployed, single, and living well below the U.S. poverty line. Common life circumstances included abuse as a child, substance abuse, physical/sexual/emotional abuse as an adult, transience and homelessness, trading sex for money, shelter, and/or drugs. Nearly every respondent stated she had no friends. The women had few personal relationships and few connections to religious institutions or health and social service programs. All had their first pregnancy as a teenager and all but one dropped out of school at that point. Few reported routine prenatal care and none reported routine use of contraceptives or condoms.
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dotAll of the women in the study expressed a strong desire to be a parent. The themes that emerged to explain that motivation included:
  1. replacing children who had been removed from custody;

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  3. demonstrating capacity to be a good parent; and

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  5. filling an emotional void.

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dotMost of the women saw the value in prenatal care for a healthy infant, but 10 women reported no or extremely intermittent prenatal care for any pregnancy and four reported limited prenatal care for at least one pregnancy. Only one woman stated she had continuous care for each of her pregnancies.
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dotGenerally, the women did not attribute lack of care to logistical barriers, but rather emphasized a personal history of negative and dehumanizing interactions with both the health and child welfare systems. Two common themes summarized their experience: disrespect and lack of regard for confidentiality and privacy. Many women directly attributed avoidance of HIV treatment and prenatal care to violations of confidentiality by health and social service personnel. In addition, two intrinsic factors, substance use and individual denial of HIV status, emerged as interrelated and complicating factors for engaging in care. Women with a drug use history described obtaining drugs as the priority over care. Two-thirds of the women explicitly identified denial or fear as a barrier to receiving perinatal HIV treatment.
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dotWomen in the study were asked about factors that facilitated or hindered a woman's engagement in prenatal care. Many women shared the belief that no intervention could be successful for women using drugs. When asked how medical personnel could successfully intervene to eradicate perinatal HIV transmission, women advocated for:
  1. thorough information about treatment with emphasis on benefits to the baby and

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  3. social support. They emphasized the need for thorough, honest information. They saw a critical need for persistent caring "helpers" who would maintain contact with them from diagnosis, through treatment and prenatal care.

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Limitations: The sample size is small and from a particular geographic area. However, the depth of the interview data offers insights not available from more structured approaches such as surveys.

Lessons Learned:

dotThe women's narratives in this study repeatedly described severe social deprivation, and it was from this context that they acted with ambivalence, hopelessness or denial about HIV and prenatal treatment. The social deprivation and societal disdain experienced by these women-even in the medical and child welfare settings-fostered despair and denial, profoundly motivated childbearing, and often represented a huge barrier to pursuing perinatal HIV care even though they were aware of its potential benefits.
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dotThe study found that perinatal HIV transmission in a very high-risk group of pregnant women is not due to lack of knowledge about HIV or transmission or primarily to logistical or economic access issues. Rather, the women felt that the environment of care was not welcoming to them so they avoided it. They felt that poor treatment came from providers' judgments about and disdain for substance abuse and HIV, particularly during pregnancy.
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dot The authors suggest the need to focus attention on the social environment in which women disclose their HIV status and receive medical treatment. The women in the study stressed the need for persistent, compassionate care and peer counselors who had similar life experiences to theirs to act as support. They wanted more honest and explicit dialogue with medical and social service personnel.
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Source: Lindau ST, Jerome J, Miller K, Monk E, Garcia P, Cohen M. Mothers on the margins: Implications for eradicating perinatal HIV. Soc Sci Med. 2005 Jun 28

Association between antiretroviral therapy, (including HAART) during pregnancy and maternal and obstetric outcomes

Study Question: Is antiretroviral therapy (ART) use during pregnancy associated with either adverse maternal or pregnancy outcomes?

Study Participants: Data from 2543 HIV-infected women from the Women Infants Transmission Study (WITS), a multicenter, prospective study of HIV-infected pregnant women and their infants. Data were included from women who had a singleton pregnancy that ended between January 1990 and February 2002 and resulted in a delivery at >= 20 weeks.

Study Methods: Women were enrolled any time during pregnancy and prospective data consisted of patient interviews, standard laboratory assessments including immune function and HIV RNA, and medical record abstraction. Administration of ART was at the discretion of the clinical provider.

Study Findings:

dotData were analyzed to correlate ART used during pregnancy with maternal and pregnancy outcomes. Of the 2543 women, 24% had anemia, 3% had thrombocytopenia, 3% had gestational diabetes, and 1% had gastrointestinal side effects. Stillbirths occurred in 1% of deliveries, premature rupture of membranes (PROM) in 10%, low birth weight <2500 gm in 14%, pre-term delivery (PTD) at <37 weeks in18% and at <32 weeks in 4 %.
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dotAll of these negative outcomes were decreased in women who received any ART.
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dotThe incidence of neurologic, renal, and dermatologic toxicities and hypertensive complications were low for the entire cohort, so were not analyzed further.
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dotLogistic regression analyses controlling for multiple covariates revealed that antiretroviral therapy was independently associated with few maternal complications: ART use was associated with anemia; late use of ART (at 32 weeks or delivery) was associated with gestational diabetes.
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dotLogistic regression analyses revealed an increase in PTD at <37 weeks for 10 women with late use of ART not containing zidovudine (ZDV). Late use of ART containing ZDV was associated with decreased risk for stillbirth and PTD at <37 weeks. ART containing nucleoside reverse transcriptase inhibitors but not ZDV during early and late pregnancy was associated with decreased risk for PTD at <32 weeks.
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Limitations: Exact start and stop dates for ART were not collected and data on early ART use was missing for about 20% of women, but these tended to be women with less advanced disease who may have been less likely to be on ART. The length of the study meant that more women were on ART during later years of the study as practice changed, but the authors corrected for that by grouping the women by time cohort. The study did not have enough women to assess toxicities of specific antiretroviral drugs and could not compare toxicities between pregnant and non-pregnant women.

Lessons Learned:

dotWhen ART use was analyzed by regimen potency and class of agent, it was associated with few adverse outcomes and with decreased odds for some negative obstetric outcomes. The study found no adverse pregnancy outcomes associated with combination ART.
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dotThe protective effects of ART seen in the study may have been related to a general improvement in the health of women with HIV over time including increased identification of HIV-infected women, changes in health care of HIV-infected adults, or ART use itself.
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dotThe study provides strong evidence that ART regimens currently used during pregnancy for maternal health or to decrease perinatal transmission are not associated with major adverse maternal outcomes in the population as a whole. The study also provides evidence that use of ART during pregnancy is associated with improved obstetric outcomes. Benefits of ART continue to outweigh observed risks. As new ART medications are introduced and more women are on HAART, maternal, obstetric, and infant outcomes will need to be continually reassessed.
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Source: Tuomala RE, Watts DH, Li D, Vajaranant M, Pitt J, Hammill H, Landesman S, Zorrilla C, Thompson B; Women and Infants Transmission Study.
Improved obstetric outcomes and few maternal toxicities are associated with antiretroviral therapy, including highly active antiretroviral therapy during pregnancy. J Acquir Immune Defic Syndr. 2005 Apr 1;38(4):449-73.

Impact of provider persistence in achieving universal HIV screening in prenatal care in the United States

Study Question: What are the characteristics of prenatal care providers who successfully provide routine HIV testing to a high proportion of their patients?

Study Participants: The study surveyed attending and resident physicians in obstetrics and family practice and nurse-midwives selected by a probability sample from databases of local professional associations and residency programs in North Carolina, Connecticut, Brooklyn, NY, and Dade County, Florida in 1999. A total of 2357 providers were surveyed in the four areas and questionnaires from 1384 eligible respondents were included in the analysis.

Study Methods:

dotA self-administered mail-back questionnaire was sent to providers with repeated mailings and telephone calls to non-responders. The questionnaire covered the provider's knowledge, attitude and practices related to HIV counseling, testing, and treatment for pregnant women.
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dotThe percentage of providers reporting universal testing by characteristics of the provider's practice, medical specialty, how strongly they encouraged testing, perceptions of patients' risk, and whether they saw patients in public clinics was computed. A multivariate logistic regression analysis was done which included all these variables. Each geographic area was treated separately.
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Study Findings:

dotWhile 95%-99% of providers reported that they routinely offered HIV testing to all pregnant women, the average percentage of women actually tested was 64%-89%. The percentage reporting that all of their patients were tested ranged from 12%-62% with about one-third of all respondents from the four locations reporting 100% testing.
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dotProviders' professions were strongly associated with universal testing with family practice attendings and residents generally highest and nurse-midwives lowest.
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dotThe provider's degree of patient encouragement to be tested was consistently associated with having all patients test. In three of four locations, strongly encouraging women to be tested who were believed to be at low risk was significantly associated with universal testing. In one location, continuing to offer testing throughout pregnancy to women considered to be "high-risk" and in two locations, continuing to offer testing to women considered to be "low-risk" were associated with higher universal testing.
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Limitations: As survey research, the study may be limited by sampling errors such as missing people from the sample and nonresponse, although the authors made efforts to minimize those. One limitation may be providers' desire to respond "correctly" rather than reporting actual practice which may lead to overestimation of both offering testing and actual testing.

Study Findings:

dotProviders' attitudes and practices about how strongly they urge patients to be tested can make an important difference in achieving universal HIV screening of pregnant women.
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dotProviders will continue to need education about the critical role their encouragement and persistence can have on testing rates among women particularly those perceived to be at low risk. Given the variability among professionals, education and other interventions to remove barriers need to be targeted to all providers of prenatal care.
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Source: Anderson JE, Koenig LJ, Lampe MA, Wright R, Leiss J, Saul. Achieving universal HIV screening in prenatal care in the United States: provider persistence pays off. AIDS Patient Care STDS. 2005 Apr;19(4):247-52.

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