Does prior knowledge of maternal age affect judgment of operators measuring nuchal translucency?

OBJECTIVES: To test the hypothesis that, in real life standard clinical practice, knowledge of maternal age (MA) by operators measuring nuchal translucency (NT) for screening of aneuploidy may influence their judgment, resulting in a tendency to over-measurement in older women. MATERIAL AND METHODS: We retrospectively analyzed the correlation between MA and NT MoMs in data from a group of operators from several clinical practices, with different levels of experience. RESULTS: We assessed 66,918 measurements by 41 operators. There was no association between NT and MA in all the measurements analyzed together In 3 experienced operators (N > 1900), there was a significant association between the variables, although all were negative and its effect size was very small (0.004, 0.006 and 0.01). However one of the less experienced operators (N = 47) had a statistically significant (p = 0.0002) and strong (R2 = 0.2634) association. We tested the hypothesis that this bias could occur in less experienced operators but time/experience would correct it. We did the same analyses for each set of 50 tests, sorted by date, for each operator up to the 7th set. No significant progression was identified in association with increase in experience. CONCLUSIONS: Our data does not support the hypothesis that operators might be biased towards over-measuring NT in older women.

[Screening for Down's syndrome can cause both security and anxiety].

Most women experience periods of increased anxiety and worry during pregnancy, and in many cases it is an appropriate response to a novel situation of change and transition. Women participate in screening for Down's syndrome in order to receive a general reassurance of the health of their baby. Generally, a screen-negative result does increase pregnant women's feelings of reassurance. A screen-positive result generates uncertainty and anxiety, however this anxiety declines to normal levels following a normal diagnostic result.

Patient and provider attitudes toward screening for Down syndrome in a Latin American country where abortion is illegal.

OBJECTIVE: To examine patient and provider attitudes toward first trimester nuchal translucency (NT) screening for Down syndrome and to assess how patients consent to screening in a country where abortion is illegal. METHODS: Patients presenting for first trimester ultrasound including NT screening in two obstetric units in Chile completed a questionnaire about their attitudes toward NT screening and perspectives on the consent process. A follow-up questionnaire assessed satisfaction with the test. Prenatal care providers also completed a questionnaire ascertaining their perspectives on NT screening. RESULTS: A total of 107 patients completed the initial questionnaire and 78 completed the follow-up questionnaire. Although 98 (94%) patients desired NT screening only 38 (38%) indicated that they would undergo diagnostic testing if they received screen positive results. Only 3 patients screened positive; however, 15 (20%) participants experienced increased anxiety after the test. Almost all of the 36 providers surveyed indicated that they counsel their patients thoroughly, but 38 (39%) patients reported that they received adequate information. CONCLUSION: NT screening is often performed without patients' full understanding of the implications of potential results and may cause anxiety. Providers should elicit patients' preferences regarding prenatal testing and engage them in shared decision making about whether to undergo screening, particularly when abortion is not an option.

First-trimester screening: dealing with the fall-out.

The articles collected together in this issue describe first-trimester screening for a variety of complications. With the advance of both technology and research, early pregnancy screening is becoming ever more sophisticated and complex. While there are clear benefits to most women receiving early reassurance that their baby is developing as expected, there is no evidence to suggest that an earlier prenatal diagnosis has less long-term emotional impact than at later gestations. The poignancy of ultrasound images for many parents means that it can be especially difficult to manage the anxiety when an ultrasound marker is highlighted as potential cause for concern. They can then face a journey of anxiety-laden uncertainty, which can extend through much of the pregnancy, and even beyond. Professionals involved in screening need to recognise and acknowledge such adverse side-effects and develop the skills necessary to help parents understand and cope with the uncertainties inherent in the process.

Perception of risk in relation to ultrasound screening for Down's syndrome during pregnancy.

OBJECTIVE: to explore how information about being at risk of carrying a fetus with Down's syndrome was understood, and whether the actual risk and the woman's perception of risk was associated with worry or depressive symptoms during and after pregnancy. DESIGN AND SETTING: observational study. The sample was drawn from the intervention group of a Swedish randomised controlled trial of ultrasound screening for Down's syndrome by nuchal translucency measurement. MEASUREMENTS: data were collected by three questionnaires. Questions were asked about recall of the risk score and perception of risk. The Cambridge Worry Scale and the Edinburgh Postnatal Depression Scale measured worry and depressive symptoms, respectively, on all three occasions. FINDINGS: of the 796 women who provided data for this study, one in five was unaware that the risk score was noted in her case record. In total, 620 women stated that they had received a risk score, but only 64% of them recalled the figure exactly or approximately. The actual risk was associated with the perceived risk, but of the 31 women who perceived the risk to be high, only 14 were actually at high risk. A high-risk score was not associated with worry or depressive symptoms in mid-pregnancy, in contrast to a woman's own perception of being at high risk. Two months postpartum, no associations were found between maternal emotional well-being and actual or perceived risk. CONCLUSIONS: information about fetal risk is complicated and women's perception of risk does not always reflect the actual risk, at least not when presented as a numerical risk score. The possibility that the information may cause unnecessary emotional problems cannot be excluded. IMPLICATIONS FOR PRACTICE: caregivers should ascertain that information about fetal risk is interpreted correctly by pregnant women.

'This is just what you do when you are pregnant': a qualitative study of prospective parents in Iceland who accept nuchal translucency screening.

BACKGROUND: nuchal translucency (NT) screening, mainly for Down's syndrome, in the first trimester of pregnancy is becoming an established practice in many countries. However, very little is known about parents' knowledge and beliefs prior to undergoing screening. Such information is essential to form guidelines regarding informed decision-making. OBJECTIVES: to explore the influences on prospective parents' decision-making in relation to NT screening in early pregnancy, and to gain insight into how the views of prospective mothers and fathers towards the benefits and implications of screening may differ. DESIGN: a qualitative study using framework analysis based on a grounded theory approach. PARTICIPANTS: 10 couples, who had decided to have NT screening, were recruited from four community health centres in Iceland. All pregnancies were defined as 'low risk' for fetal anomaly. DATA COLLECTION: semi-structured interviews were conducted separately with each prospective mother and father at 7-11 weeks and again at 20-24 weeks of gestation. In total, 40 interviews were conducted. FINDINGS: the majority of prospective mothers in this study had already decided to accept NT screening before they entered the public antenatal care system. The decision to accept screening seemed to lie with the prospective mother and had hardly been discussed by the couple. Differences between prospective mothers and fathers were observed in relation to the expression of expectations towards the benefits of screening and the perception of disability, which is of interest in the context of information provided to prospective parents. CONCLUSIONS AND IMPLICATIONS: the findings from this study are of interest to clinicians and policy makers forming future guidelines for antenatal care both in Iceland and further afield. It highlights the need for information for prospective parents to be in the public domain prior to their contact with maternity services. Additionally, findings add to knowledge of prospective fathers in early pregnancy regarding how their perceptions of disability may contribute to the couple's decision to accept screening.

Discovery of soft markers on fetal ultrasound: maternal implications.

OBJECTIVE: to explore women's experiences of referral to tertiary care on the basis of uncertain ultrasound findings. DESIGN: a qualitative method using Rice and Ezzy's thematic analysis approach. Data were gathered through two in-depth interviews over a six to eight-month period. PARTICIPANTS: a total of 20 interviews were conducted among pregnant women, purposively recruited at a tertiary facility. Inclusion criteria were based on detection of an isolated soft marker in an otherwise normal pregnancy. DATA ANALYSIS: interview data were transcribed and data were subjected to thematic analysis. FINDINGS: mothers journeyed through a temporal sequence of adjustment following referral to specialist services. Four distinct phases were identified: realisation; making sense of events; anxious waiting; and having no clear resolution. CONCLUSION: trends of increasing prenatal surveillance together with advancing technology make this study timely and of global interest. Findings suggest that women identified as 'at risk' before being discharged uneventfully may be prone to attachment issues and a host of other difficulties. The complexities inherent in this experience should be of interest to a broad range of health professionals. An appreciation of this experience may assist midwives and other health professionals to provide more meaningful maternal support to women identified as 'at risk'.

Maternal anxiety about first trimester nuchal translucency screening and impact of positive screening results.

BACKGROUND: To assess pre- and post-procedural maternal anxiety about nuchal translucency thickness screening for Down syndrome in the first trimester of pregnancy, and the psychological impact of positive screening results. METHODS: A total of 172 women whose screens were positive for excess fetal nuchal translucency thickness, and 180 women whose screens were within normal limits (controls) were recruited. Anxiety levels were measured with the Spielberger State-Trait Anxiety Inventory just before screening, 1 week after screening, at 22 weeks' gestation, and 6 weeks after delivery. After delivery, all women were asked to respond using a Likert-type scale regarding their attitudes toward fetal nuchal translucency screening. RESULTS: Women with positive screening results reported significantly greater psychological distress on state-anxiety scores after the full report was received. The trait- and state-anxiety scores before screening, at 22 weeks' gestation, and after delivery did not differ between groups. Both groups of women were strongly positive about nuchal translucency screening, both in the current pregnancy and in future pregnancies. CONCLUSION: Women with positive screening results did not have a sustained increase in anxiety and remained supportive about the value of screening. Clinician concerns about causing maternal anxiety should not be an impediment to screening.

[A qualitative study of pregnant women's choice of nuchal translucency measurement]. / En kvalitativ undersøgelse af gravides valg af nakkefoldskanning.

INTRODUCTION: In 2004, The Danish National Board of Health introduced new guidelines for prenatal screening and diagnosis. Subsequently, all pregnant women in Denmark have been offered a maternal serum screening and a nuchal translucency measurement (NTM). The results are combined to a single risk estimate of carrying a Down syndrome child. All pregnant women are also offered a late second trimester scan for fetal abnormalities. Pregnant woman should be fully informed to enable them to make an informed choice. We explored the role of information in the pregnant women's understanding and decision-making for the NTM. MATERIALS AND METHODS: 26 consenting pregnant women were interviewed after their first visit to their GP and again after the late ultrasound scan. Our results are mainly based on the first interviews and the 24 participants who chose to have a NTM. RESULTS: The pregnant women consider a fetal scan as an attractive routine procedure during pregnancy. Apart from the information about prenatal examinations given by the GP, the pregnant women do not subsequently seek further information. The most important motives for wanting to have the NTM are 1) assurance, 2) choice, 3) expectations of the scan being a happy event, and 4) the idea that the examinations are approved by the Danish health care system. DISCUSSION: The decision to have a NTM is motivated by expectations that exceed the specific medical aim of the examination and the content of the information provided. The pregnant women believe in a link between knowledge and anxiety, and therefore do not wish to "know too much". Our results show that the pregnant woman's conception of the information provided and her motives for having a NTM are based on strategies and rationales that hinder an informed choice.

Nuchal translucency screening: how do women actually utilize the results?

OBJECTIVE: To examine how women use the nuchal translucency (NT) risk adjustment in decision-making for invasive prenatal diagnosis. STUDY DESIGN: Retrospective cohort study of 1083 consecutive NT screening exams. A screen-positive test was defined as a risk > or = 1/300. Primary outcome was what proportion of screen-positive or screen-negative women chose to undergo chorionic villus sampling or amniocentesis. RESULTS: Of the women tested, 79% (858/1083) were > or = 35-years-old and 88% (756/858) of these women had a decrease in age-related risk after NT. Of the screen-negative women, 31% (238/756) > or = 35 years of age chose to have invasive testing as compared to only 11.2% (25/223) of those < 35 years of age (p < 0.001). Of the screen-positive women, 71% (72/102) > or = 35 years of age and 100% (2/2) < 35 years of age chose to obtain invasive testing (p = 0.368). CONCLUSION: First-trimester NT screening for Down syndrome (DS) enables a significant number of women over age 35 to lower the risk for DS several fold and avoid the risks of invasive testing. However, despite significant reductions in age-specific mid-trimester DS risks, a relatively high proportion of women > or = 35 years of age still opted for invasive testing.

Women's interpretation of an abnormal result on measurement of fetal nuchal translucency and maternal serum screening for prenatal testing of Down syndrome.

OBJECTIVE: To assess the effects of sociodemographic and health-provider factors on women's understanding of abnormal results on measurement of nuchal translucency (NT) and maternal serum screening (MSS), 18 months after the implementation of a policy aimed at increasing women's awareness regarding MSS. METHODS: A representative sample of women (n = 734) who gave birth in Parisian maternity units in 1999 were asked about their understanding of an abnormal result on MSS and NT. We assessed the effects of sociodemographic and health-provider factors on the probability of women interpreting an abnormal result correctly, misinterpreting it as a definitive diagnosis, or declaring that they did not know how to interpret the result. Response rate was 92% and the analyses included multinomial models. RESULTS: For both MSS and NT measurement, the majority of women interpreted an abnormal result correctly. However, there were substantial sociodemographic differences in the probability of women interpreting an abnormal result correctly, and more so in the probability of their declaring not to know how to interpret the result. The probability of correct interpretations was substantially higher, and that of declaring not to know how to interpret the result substantially lower, for MSS than NT measurement. However, for several sociodemographic groups, the proportion of women who misinterpreted an abnormal result on screening as indicative of a definitive diagnosis was also higher for MSS as compared with NT measurement. CONCLUSIONS: These findings underscore the need for additional efforts, along with alternative strategies, to inform women about the implications of prenatal screening, particularly in the case of measurement of NT.

Nuchal translucency screening and anxiety levels in pregnancy and puerperium.

OBJECTIVES: To compare levels of anxiety and depression during pregnancy and puerperium between women who are offered nuchal translucency (NT) screening routinely and those who are not, and to compare levels between women accepting and those declining screening. METHODS: In 12 midwife practices in three different health districts an experimental NT screening program was offered to pregnant women between 1 June 1999 and 1 January 2001. As part of this implementation study, questionnaires including the Hospital Anxiety and Depression Scale (HADS) were completed: after the patient was informed but before screening (T1), at 20 weeks of gestation (T2), and 6 weeks after delivery (T3). A control group of women receiving routine prenatal care (i.e. no screening offered) also completed the HADS questionnaire at 12 and 20 weeks and after delivery. RESULTS: Five hundred and twenty-seven questionnaires were analyzed. There was a screening uptake of 87% in the intervention group (i.e. those offered screening). Women in this group differed significantly in the percentage of previous miscarriages and religious background compared with the control group. We adjusted for these differences in the analysis. There were no significant differences in HADS scores between the intervention and the control groups at T1, suggesting that women receiving information on screening were not more anxious compared with women who were not informed. Women who were offered screening (acceptors as well as decliners) had significantly lower HADS levels at 20 weeks and after delivery. There were no demographic differences between women accepting and those declining screening. CONCLUSION: Informing women and offering them NT screening for Down syndrome does not increase anxiety or depression levels in pregnancy. In fact, women undergoing or declining screening seem less anxious compared with those who are not offered screening. It is possible that informing women and offering them the chance to decide autonomously whether to participate in screening reduces anxiety levels.

Pregnant women's responses to information about an increased risk of carrying a baby with Down syndrome.

BACKGROUND: Fetal screening for Down syndrome by an ultrasound examination, including measurement of fetal nuchal translucency, at 12 to14 weeks' gestation is presently being evaluated in a Swedish randomized controlled trial. Women at high risk were offered an amniocentesis to obtain a definite diagnosis. The aim of this study was to explore women's reactions and responses to information about being at high risk after the scan, with a special focus on reactions to a false positive test. METHOD: Interviews were conducted with 24 women within 1 week after the scan, in midpregnancy, and 2 months after the birth. The interviews were analyzed qualitatively. Down syndrome was confirmed in 4 women, who chose to terminate the pregnancy. The remaining 20 women had a false positive test. RESULTS: For the majority, the risk information caused strong reactions of anxiety and worries about the future. A typical way for women to cope was to "withhold" the pregnancy, to take a "timeout," and try to live as if they were not pregnant any longer. Some weeks later, when the women received normal results from the chromosome analysis, they resumed being pregnant. Six women ages more than 35 years who had a risk score lower than their age-related risk did not express similarly strong reactions. Two months after the birth of a healthy baby, most stated they would undergo the same procedure in a subsequent pregnancy. One woman still suffered from the experience when interviewed at 2 months after the birth, and another said she regretted participating in the fetal screening program. CONCLUSIONS: A false positive test of fetal screening for Down syndrome by ultrasound examination may cause strong reactions of anxiety and even rejection of the pregnancy. The prevalence of such reactions and possible long-term effects need further investigation.

Women's opinions on the offer and use of nuchal translucency screening for Down syndrome.

OBJECTIVE: To study the attitude of Dutch women to the offer and subsequent (non)use of nuchal translucency (NT) screening for Down syndrome in the first trimester of pregnancy, in a country where screening is not routinely offered under 36 years of age. METHODS: An experimental NT screening programme offered to pregnant women, together with a series of questionnaires to be completed before and after the offer and (non)use of screening, in 12 midwife practices in three different health districts. PARTICIPANTS: Cohort of pregnant women who had their first prenatal care visit in the participating midwife practices between 1 June 1999 and 1 January 2001. MAIN OUTCOME MEASURES: Women's knowledge and understanding of prenatal screening tests; attitude towards screening offer; perceived freedom of choice; satisfaction with information given; change in attitude over time. RESULTS: Eighty-six percent of women accepted the offer of NT screening. Seventy percent had previous knowledge of NT screening and 92% considered the information given before screening clear and sufficient. Thirty-nine percent of women felt worried to some extent after being given the information, but only 3% would have preferred not to have been informed at all. Ninety percent of women (including 68% of decliners) agree that information on Down syndrome screening should be extended to all pregnant women and feel competent in deciding on screening participation. CONCLUSION: When NT screening is offered as a new screening strategy its concept is understood and well accepted. The large majority of women, including the decliners, are in favour of its standard offer.

Accepting or declining the offer of prenatal screening for congenital defects: test uptake and women's reasons.

OBJECTIVES: Prenatal screening for Down syndrome has become standard practice in many western countries. In the Netherlands, however, prenatal screening tests for congenital defects are not offered routinely. The present study aims to assess test uptake in a large, unselected population of pregnant women, and to give more insight into the decision for or against prenatal screening through nuchal translucency measurement or maternal serum screening. PATIENTS AND METHODS: The study is part of a randomized controlled trial with two groups, each being offered a different prenatal screening test, and a control group. Pregnant women received postal questionnaires at three stages of their pregnancy. RESULTS: Of the women being offered the nuchal translucency measurement or the second trimester maternal serum test, 53 and 38% respectively accepted the test offer. The main reasons for accepting were 'gaining knowledge about the health of the foetus/curiosity' (50%), 'favourable characteristics of the screening test' (18%), and 'increased risk of having a child with DS' (15%). The main reasons for declining were 'unfavourable characteristics of the screening test' (42%), 'not applicable/not necessary' (35%), 'anxiety/uncertainty' (36%), 'adverse characteristics of the invasive tests' (32%), and 'being against abortion' (15%). DISCUSSION: The uptake of prenatal screening was relatively low, and different distributions of reasons were reported, compared to other studies. These differences may be due to the specific Dutch situation in which prenatal screening is not part of standard prenatal care. The question arises as to whether informed decision-making would be reduced if prenatal screening became routinised.