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Voluntary HIV counseling and testing during prenatal care in Brazil.

OBJECTIVE: Voluntary HIV counseling and testing are provided to all Brazilian pregnant women with the purpose of reducing mother-to-child HIV transmission. The purpose of the study was to assess characteristics of HIV testing and identify factors associated with HIV counseling and testing. METHODS: A cross-sectional study was carried out comprising 1,658 mothers living in Porto Alegre, Brazil. Biological, reproductive and social variables were obtained from mothers by means of a standardized questionnaire. Being counseling about HIV testing was the dependent variable. Confidence intervals, chi-square test and hierarchical logistic model were used to determine the association between counseling and maternal variables. RESULTS: Of 1,658 mothers interviewed, 1,603 or 96.7% (95% CI: 95.7-97.5) underwent HIV testing, and 51 or 3.1% (95% CI: 2.3-4.0) were not tested. Four (0.2%) refused to undergo testing after counseling. Of 51 women not tested in this study, 30 had undergone the testing previously. Of 1,603 women tested, 630 or 39.3% (95% CI: 36.9-41.7) received counseling, 947 or 59.2% (95% CI: 56.6-61.5) did not, and 26 (1.6%) did not inform. Low income, lack of prenatal care, late beginning of prenatal care, use of rapid testing, and receiving prenatal in the public sector were variables independently associated with a lower probability of getting counseling about HIV testing. CONCLUSIONS: The study findings confirmed the high rate of prenatal HIV testing in Porto Alegre. However, women coming from less privileged social groups were less likely to receive information and benefit from counseling.

Adolescent↗

Prenatal diagnostic testing for familial dysautonomia using linked genetic markers.

Familial dysautonomia (FD), a recessively inherited disease, has been mapped to chromosome 9q31. Highly polymorphic dinucleotide repeat markers flanking the genetic locus and at the same genetic location have been identified. We describe the prenatal diagnosis of FD using linkage and linkage disequilibrium analyses with these markers. Twelve families were analysed for informativeness and of these, seven went on to have prenatal testing (a total of eight fetuses tested). All of these fetuses were predicted to be heterozygous unaffected (FD carriers). Seven fetuses have come to term and are normal. In the absence of a recombinant proband, a panel of three proximal and three distal markers is sufficient to provide informative flanking markers and an 87-96 per cent likelihood of a highly predictive test. In an additional family at 1:4 risk for FD, no DNA was available from the propositus. This family was analysed using linkage disequilibrium to the #18 allele of the tightly linked marker D9S58 in conjunction with linkage analysis using data from two unaffected children. Prenatal diagnosis in this family indicated an affected fetus.

Base Sequence↗

Prenatal genetic testing in Japan.

OBJECTIVE: To examine the use of prenatal diagnosis and maternal serum marker tests (MSMTs) from January 1 to December 31, 1997, in Japan. METHODS: Questionnaires were sent to medical facilities, which represent about 80% of the facilities providing prenatal diagnosis. RESULTS: Prenatal diagnosis was performed in 5,748 women, of whom 5,538 (5,516 amniocenteses and 22 chorionic villus sampling; 96.3%) were screened for chromosomal abnormalities. 89.1% (221/248) of those diagnosed to have fetal abnormalities terminated the pregnancy. Written informed consent signed by both the obstetrician and the pregnant woman undergoing prenatal diagnosis was the policy in 76.5% facilities. A total of 14,682 MSMTs were performed: 8,919 were in pregnant women under 34 years of age and 5,763 were in women aged 35 years or older. Follow-up data were obtained in 10,209; 6,918 women under 34 years were tested; of those 448 had a positive result; 349 underwent amniocentesis and trisomy 21 was diagnosed in 9. 3,291 women aged 35 years or older were tested; of those 634 had a positive result; 607 underwent amniocentesis and trisomy 21 was found in 16 cases. Written informed consent before MSMTs was obtained in 34.5% of the facilities. CONCLUSION: The data showed that only 4% of pregnant women above age 35 years underwent amniocentesis in Japan, and a small proportion of pregnant women were being offered MSMTs. Prenatal testing should be carried out only on a voluntary basis. For this purpose, women must be adequately informed.

Abortion, Eugenic↗

Participation in prenatal screening tests and intentions concerning selective termination in Finnish maternity care.

AIMS: The study examined how prenatal screening tests are presented to women, factors associated with women's participation in screening, their experience of decision-making and intentions concerning pregnancy termination, and hospital data on rates of selective terminations. METHODS: Questionnaires were given to pregnant women visiting maternity centres in two Finnish towns in which serum screening was offered (n = 1,035) and in one town where midtrimester ultrasound screening was offered (n = 497). Response rates to the questionnaires were 88 and 85%, respectively. Other questionnaires asking about selective terminations following detected fetal disorders were sent in 1993 to all public hospitals with obstetrics or gynaecology departments (response rate 100%). RESULTS: The serum screening test had usually been offered to women as a free choice, but for 22% of them it was presented as a routine procedure. Most women (92%) underwent serum screening and most (86%) found the decision to participate or not easy. In almost every aspect of presentation and participation studied, serum and ultrasound screening differed from each other. 85% of respondents to ultrasound screening answered that it was offered as a routine procedure. Close acquaintance with a person with congenital disability was negatively associated with participation in serum screening and with the intention to terminate pregnancy in case of a detected disability. 27% of women in the serum screening survey and 22% in the ultrasound survey declared that they would have declined pregnancy termination if a fetal disorder had been detected. However, according to the hospitals' data, only 13% of pregnancies with a serious fetal disorder detected were continued. CONCLUSIONS: All prenatal screening tests, including ultrasound examinations, require an adequate process of informed consent. Because the aim of such tests is to detect fetal malformations and syndromes, health care professionals should discuss the implications with women before they decide. Because acquaintance with a disabled person was found to associate with participation in screening and with intentions about selective termination, women's perceptions of lives of the disabled should receive more attention in future studies.

Abortion, Induced↗

Do physicians discuss HIV testing during prenatal care?

OBJECTIVE: To determine the frequency with which Hamilton, Ont, general practitioners and family physicians discussed and offered HIV testing during prenatal care. DESIGN: Cross-sectional mailed survey. SETTING: Family physicians' and general practitioners' offices in Hamilton, including group or solo private practices and community health centres. PARTICIPANTS: General practitioners and family physicians in Hamilton identified from the Ontario Medical Association and the 1995 Canadian Medical Directory. Two hundred forty-one practitioners were sent surveys; 25% had moved or no longer practised family medicine, and 65% (140 of 216) were returned. MAIN OUTCOME MEASURE: Frequency with which physicians discuss with and offer HIV testing to prenatal patients. RESULTS: Eighty percent of clinicians felt they understood their professional role in providing HIV testing, and more than 90% had referred female patients for HIV testing. Eight percent of physicians always discussed HIV when reviewing pregnancy care, and 5% always offered HIV testing to patients in the first trimester of pregnancy. CONCLUSIONS: Currently, few physicians discuss HIV testing with all their prenatal patients.

Cross-Sectional Studies↗

Understandings of Down's syndrome: a Q methodological investigation.

Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there were significant differences in how participants believed they personally would adjust to an affected child. Furthermore, whether or not people with Down's syndrome were seen to be within 'a continuum of normality' sheds light on how views about the condition may be linked to views about prenatal testing and termination of pregnancy. The study demonstrates that people hold complex and sometimes seemingly contradictory views about Down's syndrome, and that these are likely to influence their prenatal testing decisions. Antenatal settings currently provide little opportunity for people to discuss and explore their beliefs about disability. It is argued that this may affect the ability of some individuals to make decisions that are informed by their own views and values.

Decision Making↗

Attitudes towards prenatal HIV testing and treatment among pregnant women in southern India.

During June and July 1999, oral interviews were conducted on 666 women seeking prenatal care at 9 medical facilities in Chennai and Mysore, India, to assess their attitudes towards prenatal HIV testing and antiretroviral prophylaxis for preventing perinatal HIV transmission if needed. Seventy-eight per cent were aware of the risk of perinatal HIV transmission and 36% knew that intervention could reduce the chances of such transmission. Eighty-six per cent would agree to undergo prenatal HIV testing but only 21% of all respondents would make this decision independently while 46% said their husband would have to decide. Of those women who would not agree to testing, 21% would agree if testing were compulsory. Ninety-seven per cent of respondents would undergo antiretroviral prophylaxis to prevent vertical transmission, and 94% would consider alternatives to breastfeeding if HIV positive. Considering its widespread acceptability, prenatal voluntary counselling and testing may be an affordable method of HIV prevention for this population.

AIDS Serodiagnosis↗

Potential factors that may affect acceptance of routine prenatal HIV testing.

BACKGROUND: Despite increasing advocacy for an "opt-out" strategy in routine prenatal HIV screening programs in Canada, no published studies have examined factors that may affect acceptance of prenatal HIV testing. METHODS: We included all pregnant women in Alberta who received prenatal care (N = 38,712) and their caregivers (N = 2,007) between January 1 and November 30, 2000. Factors associated with non-acceptance of HIV testing in both pregnant women and their caregivers were assessed using multivariate logistic regression. RESULTS: Overall, 1.5% of women declined HIV testing. First Nations women were about twice as likely to decline the test (adjusted odds ratio [OR(adj)] 1.91, 95% CI [1.42-2.58]) compared to non-First Nations women (p < 0.001). The proportion also increased with age (chi2 trend p < 0.001) in the general population. In First Nations women, however, most (3.2%) declined in the 20-24 year age group. No significant effect was seen for a socio-economic status marker or for the place of residence. The caregivers of women who declined HIV testing were more likely to be female (OR(adj) 1.56 [1.28-1.89]), midwives (OR(adj) 140.65 [58.61-337.49]), other non-obstetrical medical specialties (OR(adj) 4.92 [1.94-12.47]), and general practitioners (OR(adj) 3.44 [1.87-6.33]). CONCLUSION: In an "opt-out" routine prenatal HIV screening program, the characteristics of both the pregnant women and their caregivers may contribute to the non-acceptance of HIV testing. A higher likelihood of declining HIV testing among First Nations pregnant women and other pregnant women under the care of midwives and female physicians warrants further study.

AIDS Serodiagnosis↗

First-year results of routine alpha-fetoprotein testing on prenatal patients in a family practice.

For one year all pregnant women presenting to a family practice clinic for prenatal care were routinely tested for maternal serum alpha-fetoprotein levels (MSAFP). Unexpectedly, 14 (15.7 percent) of 89 tested patients had low MSAFP levels. All 14 pregnant women underwent appropriate diagnostic workups because of the low MSAFP level and were subsequently followed until delivery. Although the literature reports that low MSAFP levels are associated with chromosomal anomalies, none of the 14 women were delivered of infants with anomalies. Reasons for the unexpectedly high rate of abnormal MSAFP levels were investigated. Investigation revealed that normal values for MSAFP tests had been derived from testing performed on high-risk pregnant women who had an inherently higher rate of abnormal pregnancies and, apparently, a different range for normal MSAFP levels than a population of unselected family practice patients. The results of this study demonstrate that it may not be appropriate to apply diagnostic algorithms based on data derived in high-risk subspecialty clinics to unselected patients in a family practice.

Adult↗

Evaluation in patients with Alport syndrome of knowledge of the disease and attitudes toward prenatal diagnosis.

Cloning of the COL4A5 gene has now made possible prenatal testing for Alport syndrome with X-linked dominant inheritance. We interviewed 27 females and 24 males with Alport syndrome to evaluate their knowledge of the disease and its transmission, and their attitudes to prenatal testing. Twenty-two males and 8 females were on renal replacement therapy. In all cases transmission was compatible with X-linked disease. Only 59% of the interviewees (74% of women, 42% of men) knew that gender was the major determinant in progression of the disease. Knowledge of the mode of inheritance was adequate in only 25%, in both sexes. Seventy percent of the participants (78% of women, 63% of men) would use prenatal testing. Of the women in favor of prenatal diagnosis, 67% and 39% would terminate pregnancy in the case of an affected male or female fetus, respectively. Of the men in favor of prenatal diagnosis, 53% would consider termination of an affected fetus. In summary, a majority would use prenatal testing, but only one or two thirds of them wished to use selective abortion. As in other inherited disorders, there is a discrepancy between the demand for prenatal diagnosis and the decision to terminate pregnancy. Most of the participants who would terminate a pregnancy had, however, little knowledge of the clinical and genetic aspects of Alport syndrome on which to base such a decision. An important aspect of genetic counselling is to assist consultants in reaching a decision regarding future reproductive behaviour which is appropriate to their situation. This study underlines the need to improve education and counselling to assure appropriate use of prenatal testing.

Abortion, Eugenic↗

Reasons for trisomy 13 or 18 births despite the availability of prenatal diagnosis and pregnancy termination.

BACKGROUND: Few studies have evaluated the reasons why lethal chromosomal anomalies continue to occur despite the importance of this question for maximizing perinatal care. AIMS: To determine why trisomy 13 or 18 births continue to occur in Alaska. STUDY DESIGN: Case series involving review of maternal and infant medical records. SUBJECTS: All 28 known infants and fetuses that died with trisomy 13 or 18 during 1992-2001 and their mothers. OUTCOME MEASURES: The proportion of mothers that declined or received a variety of routine prenatal tests, the results of prenatal testing, and the impact of testing on decisions related to pregnancy. RESULTS: Seventeen women declined pregnancy termination or amniocentesis, 10 had no prenatal risk factors and were not offered these procedures, and one woman had an amniocentesis but was not offered pregnancy termination. Twenty-six women had >/=1 prenatal ultrasounds; for 17 women, these were interpreted as normal throughout pregnancy (n=11) or until after 30 weeks gestation (n=6) despite substantial fetal malformations. Fourteen of 15 women with an abnormal ultrasound had an amniocentesis compared to one of eight women whose only risk factor was advanced maternal age. CONCLUSIONS: Most trisomy 13 or 18 deliveries occurred to women who declined amniocentesis or pregnancy termination. Failure to identify abnormalities on prenatal ultrasound may have contributed to the decision not to have these procedures.

Abortion, Eugenic↗

The impact of prenatal genetic testing on quality of life in women.

The techniques of prenatal genetic diagnosis are being used with increasing frequency in the provision of prenatal care. One aim of such testing is to benefit pregnant women. Inadequate data exist, however, to indicate whether testing provides benefits for or imposes burdens upon the women involved. The influence of testing on anxiety during pregnancy, on a woman's sense of control over the progress and outcome of pregnancy, and on a woman's relationships with her partner and future child are all of concern. Investigation of these questions should be integral to studies undertaken to assess prenatal genetic testing.

Abortion, Induced↗

Adherence to the screening program for HBV infection in pregnant women delivering in Greece.

BACKGROUND: Hepatitis B infection (HBV) is a major Public Health Problem. Perinatal transmission can be prevented with the identification of HBsAg(+) women and administration of immunoprophylaxis to their newborns. A national prevention programme for HBV with universal screening of pregnant women and vaccination of infants is in effect since 1998 in Greece. METHODS: To evaluate adherence to the national guidelines, all women delivering in Greece between 17-30/03/03 were included in the study. Trained health professionals completed a questionnaire on demographic data, prenatal or perinatal screening for HBsAg and the implementation of appropriate immunoprophylaxis. RESULTS: During the study period 3,760 women delivered. Prenatal screening for HBsAg was documented in 91.3%. Greek women were more likely to have had prenatal testing. HBsAg prevalence was 2.89% (95%CI 2.3-3.4%). Higher prevalence of HBV-infection was noted in immigrant women, especially those born in Albania (9.8%). Other risk factors associated with maternal HBsAg (+) included young maternal age and absence of prenatal testing. No prenatal or perinatal HBsAg testing was performed in 3.2% women. Delivering in public hospital and illiteracy were identifiable risk factors for never being tested. All newborns of identified HBsAg (+) mothers received appropriate immunoprophylaxis. CONCLUSION: The prevalence of HBsAg in Greek pregnant women is low and comparable to other European countries. However, immigrant women composing almost 20% of our childbearing population, have significant higher prevalence rates. There are still women who never get tested. Universal vaccination against HBV at birth and reinforcement of perinatal testing of all women not prenatally tested should be discussed with Public Health Authorities.

Adult↗

Attitudes toward genetic testing and fetal diagnosis, 1990-1996.

With few exceptions, existing research on attitudes toward genetic testing and prenatal diagnosis is based on small studies using nonprobability samples of specialized populations. In this paper, we use a nationally representative sample from the General Social Survey to report on attitudinal change between 1990 and 1996, and to explore socio-demographic predictors of public views on genetic technology and reproduction in the context of changing mass media coverage between 1988 and 1995. During that period, media coverage of prenatal testing became both less frequent and less favorable, despite increasing use of this technology, whereas media reports about other types of genetic testing increased in frequency and became more favorable. Between 1990 and 1996, attitudes toward genetic testing remained stable, although the attitudes of specific demographic subgroups may be changing in different directions. Attitudes toward abortion in case of genetic defect became more negative over the period studied. We explore some of the implications of these findings.

Abortion, Induced↗

Prenatal HIV testing in Wisconsin: results of a survey among women who gave birth in 2003.

Since 1995 the United States Public Health Service has recommended voluntary prenatal human immunodeficiency virus (HIV) testing for all pregnant women in the United States. To better understand how well this goal is being met in Wisconsin, the Wisconsin Division of Public Health facilitated a review of hospital medical records for a random sample of women who gave birth in Wisconsin in 2003. Of the 968 maternal medical records reviewed, 68% (95% CI: 65%-71%) showed evidence that the mother had a completed HIV antibody test during pregnancy. Rates of prenatal HIV testing were higher in Milwaukee County. After controlling for residence, prenatal HIV testing rates were higher among Hispanic mothers compared to white mothers; African American and white mothers had similar testing rates. These data suggest that the goal of voluntary HIV testing for all pregnant women is not currently being met in Wisconsin.

Adult↗

Prevention of vertical HIV transmission with zidovudine: projected impact of HIV testing and prenatal care.

We sought to estimate the impact of maternal HIV testing and prenatal care on the potential to reduce vertical transmission through zidovudine (AZT) use by HIV-infected mothers. We evaluated the prepartum maternal HIV diagnosis rate, prenatal care, disease stage, and vertical transmission rate (from a two-part mixture model) using New York State Medicaid and vital statistics data for HIV-infected mothers and their singletons in 1985-90. We used published data to estimate the effect of AZT on vertical transmission and expert input to define other parameters for the model. Our HIV-infected (N = 1514) had a vertical transmission rate of 27.0%. HIV was diagnosed prepartum for 39.5% of women in 1990. Transmission would have been 22.2% if AZT had been taken only by the subset of women diagnosed prepartum with HIV and receiving prenatal care by 34 weeks gestation (86.7%). Transmission would have dropped to 11.2% if all women had been diagnosed prepartum with HIV and received adequate prenatal care. The observed deficiencies in prenatal care and maternal HIV diagnosis rates in this Medicaid population-based cohort must be addressed to realize the promise of AZT to reduce vertical transmission.

Adult↗

Triple test for prenatal detection of Edwards syndrome (trisomy 18).

OBJECTIVE(S): To demonstrate the limitation of complete reliance on computer generated interpretations and to highlight the need for understanding of pregnancy-related biochemistry when offering prenatal screening. METHODS: Four cases of cytogenetically confirmed trisomy 18 pregnancies are presented. All four cases underwent prenatal screening (Triple Test-AFP, uE3, t beta-hCG) at midgestation and risk assessment by the alpha algorithm. RESULTS: All four cases of trisomy 18 were assessed as being at low risk for DS and/or open NTD. Although marker levels were not consistent with either of these clinical situations, they were indicative of a compromised pregnancy. Circulating levels of trophoblast-derived antigens (uE3, t beta-hCG) were depressed (< or = 0.5 MoM) in all four cases. Further investigations (ultrasonography, amniocentesis) confirmed a trisomy 18 fetus. CONCLUSIONS: Risk assessment by computer based algorithms relies on maternal factors and specific DS/NTD marker profiles. Aberrant marker profiles are not distinguished from normal. Therefore, it is essential that prenatal screening is offered only by those competent in pregnancy biochemistry and able to identify these abnormal situations.

Adult↗

Prenatal genetic testing: content of discussions between obstetric providers and pregnant women.

OBJECTIVE: To document the content and accuracy of discussions about prenatal genetic testing between obstetric providers and pregnant women. METHODS: The first prenatal visits of 169 pregnant women with 21 obstetricians and 19 certified nurse-midwives were audiotaped and analyzed for whether a discussion of family history or genetic testing took place and if so, its length, content, and accuracy. RESULTS: Family history was discussed in 60% of visits, maternal serum marker screening in 60%, second-trimester ultrasonography for fetal anomalies in 34%, and for women at least 35 years old, amniocentesis or chorionic villus sampling (CVS) in 98%. The length of discussions of genetic testing averaged 2.5 minutes for women younger than 35 years of age and 6.9 minutes for older women. Topics discussed most often were the practical details of testing, the purpose of testing, and the fact that testing is voluntary. Discussions seldom were comprehensive. Obstetricians were more likely to make a recommendation about testing than were nurse-midwives and were less likely to indicate that testing is voluntary. Most women were satisfied with the amount of information, and the majority of women of advanced maternal age had made a decision about amniocentesis or CVS by the end of the visit. CONCLUSION: The information about genetic testing provided in the first prenatal visit is inadequate for ensuring informed autonomous decision-making. Guidelines addressing the content of these discussions should be developed with input from obstetricians, nurse-midwives, genetic counselors, and pregnant women.

Adult↗