IJE Advance Access originally published online on February 28, 2005
International Journal of Epidemiology 2005 34(2):346-352; doi:10.1093/ije/dyi021
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Maternal and Child Health |
Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices?
1 Department of Psychology (at Guy's), Health Psychology Section, Institute of Psychiatry, King's College London, 5th Floor, Thomas Guy House, Guy's Campus, London SE1 9RT, UK
3 Department of Public Health Sciences, GKT School of Medicine (Guy's Campus), 5th floor, Capital House, 42 Weston Street, London SE1 3QD, UK
* Corresponding author. Department of Psychology (at Guy's), Health Psychology Section, Institute of Psychiatry, King's College London, 5th Floor, Thomas Guy House, Guy's Campus, London SE1 9RT, UK. E-mail: theresa.marteau{at}kcl.ac.uk
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Abstract |
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Background It is not known if lower uptake of prenatal screening for Down syndrome in women from minority ethnic groups and socioeconomically disadvantaged women reflects more negative attitudes towards undergoing the test or women not acting in line with their attitudes i.e. not making an informed choice.
Methods Uptake of prenatal screening, attitudes towards undergoing the test, uptake-attitude consistency, and informed choice were assessed in a prospective study of 1499 pregnant women attending two UK hospitals.
Results Uptake was higher in white and socioeconomically advantaged women than in other women. There were no differences in attitudes towards undergoing the test; all women expressed relatively positive attitudes. Uptake-attitude consistency was higher in white and socioeconomically advantaged women than others, particularly in those with positive attitudes towards undergoing the test (76% white women with positive attitudes had the test compared with 45% South Asian women [difference 31%, 95% confidence interval (95% CI) 18–43] and 78% socioeconomically advantaged women compared with 63% more disadvantaged women (difference 15%, 95% CI 7–24)). Controlling for demographic variables, South Asian and socioeconomically disadvantaged women with positive attitudes were less likely to make an informed choice than other women [odds ratio (OR) 0.22, 95% CI 0.10–0.45 and OR 0.62, 95% CI 0.41–0.93, respectively].
Conclusion Lower uptake of screening for Down syndrome in women from minority ethnic groups and socioeconomically disadvantaged women does not reflect more negative attitudes towards screening but rather lower rates of informed choice, as assessed in this study. Healthcare systems appear to facilitate informed choices in the context of prenatal screening for Down syndrome screening less well for women from minority ethnic groups and those who are socioeconomically disadvantaged than for other women.
Keywords Informed choice, ethnicity, socioeconomic status, screening uptake
Accepted 16 December 2004
Facilitating informed choices for people considering participation in screening programmes is now considered part of good quality services,1–3 but little is known about how best to achieve this.4 In the context of prenatal screening for Down syndrome, uptake of testing is lower for women from minority ethnic groups and socioeconomically disadvantaged groups than for other women.5–10 In a recent systematic review South Asian women in the UK were up to 70% less likely to undergo prenatal screening and testing than were white women.10 Uptake of prenatal diagnostic testing has also been shown to be lower in Latino American and African American women than in other American women [odds ratio (OR) 0.19, 95% confidence interval (CI) 0.08–0.43 and OR 0.19, 95% CI 0.07–0.49, respectively].9 It has been suggested that differences in uptake may reflect differences in attitudes towards undergoing the test,6,8 but there is an absence of evidence to support or refute this. A recent American study reported differences within and between racial and ethnic groups in attitudes towards Down syndrome and prenatal genetic testing. Overall, however, ethnicity explained very little of the variation in the attitudes observed,11 suggesting that differences in attitudes associated with ethnicity are unlikely to explain the large differences in uptake of screening and diagnostic tests observed between ethnic groups.
Rather than reflecting more negative attitudes towards undergoing prenatal screening tests in women from minority ethnic groups, it may be that lower uptake of prenatal screening reflects either a failure to offer the test to women12 or a failure of women who want screening to have the offered test, or a combination of both factors. Thus, uptake in women from minority ethnic groups is less likely to reflect attitudes towards undergoing the test than it does in women from majority ethnic groups i.e. it is less likely to be informed.
An informed choice has been defined as ‘one that is based on relevant knowledge, consistent with the decision maker's values and behaviourally implemented’.13 Thus, making an informed choice can be undermined by two factors: first, poor knowledge; and second, by a failure to act in line with attitudes i.e. people with positive attitudes towards undergoing a test not doing so, or people with negative attitudes towards undergoing a test, having the test. Again in the context of prenatal screening for Down syndrome, knowledge about the screening test is lower in women from minority ethnic groups and socioeconomically disadvantaged women than in other women5,14 but little is known of the extent to which women from different ethnic and social groups hold different attitudes or are more or less likely to act consistently with their attitudes.
The aim of the current study is to assess whether the lower uptake of prenatal screening for Down syndrome in women from minority ethnic groups and socioeconomically disadvantaged groups reflects more negative attitudes towards undergoing the test (similar rates of informed choices) or greater inconsistency between uptake and attitudes (lower rates of informed choice).
This study is set against a background of poorer quality healthcare offered to those from minority ethnic groups15,16 and recent policies that seek to reduce the widening health divide between different cultural and economic groups.17 The results of the current study will provide data to inform the debate that emphasizing patient participation in healthcare decisions may exacerbate the health divide between different cultural and economic groups.18,19
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Method |
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The study used a prospective, descriptive design to investigate the offer of prenatal screening for Down syndrome to pregnant women receiving antenatal care at two UK district general hospitals in 2000. One hospital was part of a Health Action Zone, a UK indicator of high levels of neighbourhood deprivation. Both hospitals offered all women the ‘Double test’, at about 15–16 weeks of gestation. This was the most commonly offered antenatal screening test Down syndrome in the UK at the time of the study.20 The offer of screening was recorded in the women's hand held maternity notes.
Community midwives informed women in the study about the screening test verbally and in writing at their first prenatal visits at 
10–12 weeks of gestation. The method of conducting the test differed between hospitals, being conducted at a separate visit in one and as part of a routine prenatal visit at the other [for full details see ref. (21)]. The time of ultrasound scans to date the pregnancy also differed between the hospitals, conducted at 12 weeks of gestation at the separate visit hospital and at 15–16 weeks of gestation at the other. Participants were 1499 pregnant women eligible for Down syndrome screening recruited during a 6-month period. Women not eligible for screening were those with multiple pregnancies, insulin dependant diabetes, >37 years and seen after 20 weeks of gestation. Two hundred and thirty one women were not invited to participate because they were not literate in written English.
The following measures were used:
- Screening uptake was assessed from laboratory records for all participants.
- Attitudes towards undergoing the test were assessed from responses to four items: Women were asked to rate how they felt at the moment in response to ‘For me, having the screening test for Down's syndrome when I am 15 weeks pregnant will be’ by using scores from 1 to 7 for four items anchored by A bad thing/A good thing; Beneficial/Harmful; Important/Unimportant; Pleasant/Unpleasant. Responses were summed to give a score range of 0–24, with higher scores indicating more positive attitudes. Scores >12 were classified as indicating positive attitudes towards undergoing the test and scores
12 or below were classified as indicating negative attitudes towards undergoing the test. The alpha coefficient of reliability was 0.85.
- Knowledge about the screening test was assessed using an eight-item measure based on items deemed important in professional guidelines for informed consent to screening.2,22 This included questions on the condition screened for, the meaning of a low risk result, the likelihood of a low risk result, the meaning of a high risk result, the likelihood of a high risk result, the likelihood of having an affected fetus following a high risk result, the risks of diagnostic testing, and the offer of a termination for affected fetuses. The score scale ranged from zero (no correct answers) to eight (all correct answers). Scores above four (the mid-point of the scale) were classified as indicating good knowledge about the test and scores of four and less were classified as indicating poor knowledge about the test. The alpha coefficient was 0.62.
- Choices were classified as informed depending on the consistency between test uptake and women's attitudes towards undergoing the test, and their knowledge about the test and assessed using the Multi-dimensional Measure of Informed Choice.13 An informed choice to decline screening was defined as one in which women with negative attitudes towards having the test (score
12) and good knowledge (score greater than four) did not have the test; an informed choice to accept screening was defined as one in which women with positive attitudes towards having the test (score 
12) with good knowledge (score greater than four), had the test. Women with poor knowledge (score four or less) or those acting inconsistently with their attitudes were classified as making uninformed choices. Women acting inconsistently with their attitudes were either those who did not have the test while holding positive attitudes towards undergoing it (score >12) or those who had the test while holding negative attitudes towards undergoing it (score 12). Evidence to support the validity of this classification is published elsewhere.13,21,23
- Ethnicity was assessed by asking respondents to describe themselves as belonging to 1 of 10 categories (White, Black Caribbean, Black African, Black Other, Indian, Pakistani, Bangladeshi, Chinese, Other groups—Asian, Other groups—Other), amalgamated into four groups for the analyses (White, Black, South Asian, and Other).
- Socioeconomic status was assessed using a three-item scale based on educational qualification, housing tenure, and access to a car.24 The scale ranged from zero to three with higher scores indicating greater socioeconomic advantage as assessed at an individual level as opposed to area level.
- Women's gestation and parity were assessed by asking respondents to answer how many weeks pregnant they were and if the present pregnancy was their first.
- Attitudes towards undergoing the test were assessed from responses to four items: Women were asked to rate how they felt at the moment in response to ‘For me, having the screening test for Down's syndrome when I am 15 weeks pregnant will be’ by using scores from 1 to 7 for four items anchored by A bad thing/A good thing; Beneficial/Harmful; Important/Unimportant; Pleasant/Unpleasant. Responses were summed to give a score range of 0–24, with higher scores indicating more positive attitudes. Scores >12 were classified as indicating positive attitudes towards undergoing the test and scores
Procedure
The Local Research Ethics Committees at both hospitals approved the study (LREC2/1/00 and Jan 00/4f). A female researcher invited women to participate in the study at their dating scans. Women whose maternity notes indicated that they were not literate in written English were not invited to take part in the study. Participants were asked to complete the questionnaire after their scans but before the opportunity for testing. Up to two postal reminders were sent.
Data analysis
A series of univariate analyses compared uptake, attitudes, knowledge, and rates of informed choice across ethnic groups, socioeconomic status, age, and parity. These were conducted using chi square tests for categorical variables, and t-tests and one way ANOVAs for continuous variables. Differences between individual groups were further investigated using 95% CIs of difference. Multivariate logistic regression was used to determine independent predictors of making informed choices for women with positive attitudes towards having the test.
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Results |
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Response rate
Of the 2313 women approached to take part, 2059 (89%) agreed and 1791 (87%) returned questionnaires. Of these, 1499 (84%) completed questionnaires on time (i.e. before the time testing did take place or could have taken place). There were no differences in age, ethnicity, or socioeconomic status between women completing questionnaires on time or too late. In addition there was no difference in age between women who did or did not return questionnaires, the only variable on which data were available for both groups. There were no data available to compare women included and not included in the study by reason of written language ability.
Uptake: Overall uptake of the test was 49% (95% CI 47–52). Uptake was higher in white and socioeconomically advantaged women than in other women (Table 1). Uptake was higher in women who were classified in the ‘Other’ ethnic group, but the wide 95% CIs for this estimate indicated the estimate was not reliable.
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Knowledge: Overall, the mean knowledge score was 5.3, which was above the mid-point of the scale. Knowledge was higher for white, socioeconomically advantaged and older women than for other women (Table 1).
Attitudes towards undergoing the test: The mean attitude score for the total sample was 13.8, which was above the mid-point of the scale12 indicating that, on average, women had positive attitudes towards undergoing the screening test. Attitudes towards undergoing screening were unrelated to ethnicity, socioeconomic status or parity, but were associated with maternal age; older women had more positive attitudes towards undergoing the test than did younger women (Table 1).
Uptake-attitude consistency: White and socioeconomically advantaged women were more likely than other women to act in line with their attitudes (Table 2). This was the case for women with positive attitudes (76% white women with positive attitudes had the test compared with 45% of South Asian women [31% difference, 95% CI 18–43] and 78% socioeconomically advantaged women had the test compared with 63% of more socioeconomically disadvantaged women [15% difference, 95% CI 7–24]). There was, however, no difference in uptake-attitude consistency between women with negative attitudes from different ethnic or social groups (
2 = 5, P = 0.15 by ethnic group and 2 = 0.44, P = 0.93 by socioeconomic status) (Table 2).
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Informed choice: Rates of informed choice were higher for white and socioeconomically advantaged women than for other women (56% of white women vs 20% South Asian [difference 36%, 95% CI 28–44], and 59% of socioeconomically advantaged women vs 45% more disadvantaged women [difference 14%, 95% CI 8–20]) (Table 2).
Multivariate predictors of making an informed choice were investigated in women with positive attitudes, as the univariate analysis indicated that the observed differences in uptake-attitude consistency occurred between ethnic and social groups only in women with positive and not negative attitudes towards undergoing the test (Table 2). Multivariate logistic regression was used to assess the extent to which demographic characteristics were independent predictors of women with positive attitudes making informed choices to undergo the test. Ethnicity, socioeconomic status, age, and the hospital attended were each independent predictors (Table 3). South Asian women with positive attitudes were less likely to act consistently with their attitudes than were white women with similar attitudes, controlling for socioeconomic status and other demographic variables (OR 0.22, 95% CI 0.10–0.45). Socioeconomically disadvantaged women with positive attitudes towards undergoing the test were also less likely to act consistently with their attitudes than more socioeconomically advantaged women with similar attitudes, when controlling for other variables (OR 0.62, 95% CI 0.41–0.93). When these data were analysed by hospital attended, a similar effect was seen in women who attended the separate visit hospital; there were too few women from minority ethnic groups who attended the combined visit hospital for reliable analysis. Women who attended the hospital where screening was conducted at a separate visit were less likely to make an informed choice than were women who attended the hospital where screening was conducted as part of a routine visit. This finding is discussed elsewhere.21
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Discussion |
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The results of this study illustrate that the lower uptake of prenatal screening for Down syndrome observed in South Asian women and socioeconomically disadvantaged women does not reflect more negative attitudes towards undergoing screening, as measured here, but rather, lower rates of informed choice. South Asian women and socioeconomically disadvantaged women with positive attitudes towards undergoing the screening test were less likely to act in line with their attitudes than were other women. This study was not able to determine the cause of the lower consistency between positive attitudes and behaviour for these women. It may reflect a failure to offer the test to these women, or a failure, for a variety of reasons, to undergo the offered test, or a combination of both factors. It is possible, despite the policy at both hospitals to offer antenatal screening for Down syndrome to all women, that some women in this study were not offered the test. Using the Multi-dimensional Measure of Informed Choice a group of women was identified with positive attitudes who did not have the test. This would include both women offered and not offered the test. The measure is not able to distinguish between these two groups, and classifies both as making uninformed choices. The results also confirm previous findings that knowledge about the screening test is lower in women from minority ethnic groups and socioeconomically disadvantaged women.
Attitudes towards termination are associated with women's use of prenatal tests: women who decline testing have more negative attitudes towards termination.25 Women were not asked directly about their attitudes towards termination in the current study. Attitudes towards undergoing prenatal tests do, however, reflect attitudes towards termination of pregnancy.13 Thus women with negative attitudes towards termination have themselves more negative attitudes towards having the screening test.
Given the statutory requirements to reduce disparities between ethnic and social groups in the provision of health care in the UK,26 it is germane to consider how rates of informed choice can be increased to minimize the discrepancies documented here. The results suggest that increasing uptake-attitude consistency in women with positive attitudes towards undergoing prenatal screening and increasing understanding of the test both have the potential to increase rates of informed choice.
The inconsistency between attitudes and test uptake was more evident in women with positive attitudes than those with negative attitudes. This may be because negative attitudes are held more strongly and with less ambivalence than positive attitudes, making their enactment less susceptible to practical barriers.27 Decision aids have been shown to clarify women's attitudes in relation to other decisions such as whether to use hormone replacement therapy. Decision aids may therefore be effective in increasing uptake-attitude consistency in the current context by clarifying women's attitudes and thereby reducing ambivalence.28 Another approach to reducing the likelihood that people act inconsistently from their attitudes is to facilitate people anticipating a feeling of regret that could follow from inaction. Encouraging people to anticipate regret has been shown to reduce the gap between intention and behaviour in a variety of situations including childhood vaccinations, the use of condoms, unsafe driving behaviours, and consumer choices.29 Such interventions would, of course, need to be presented in ways that are accessible to women from minority ethnic and socioeconomically disadvantaged groups.
Reducing physical barriers to screening is a second way in which uptake-attitude consistency might be increased. Conducting screening so that it does not involve an extra visit to the hospital may be one way of reducing the physical barriers for these women.21 Another approach to overcoming the physical barriers for attending screening is the use of action plans involving women who want to undergo testing being asked to write down when, where, and how they plan to attend.30
Although differences in knowledge about the screening test were not the main focus of this study, the results indicate that increasing knowledge about the screening test, particularly for women from minority ethnic groups and socioeconomically deprived women could increase rates of informed choice. It is a possibility that the reduced uptake-attitude consistency is mediated through differences in knowledge but previous analyses of these data have shown that test uptake is independent of knowledge about the test.21 Given this, an intervention to increase knowledge is unlikely to alter uptake. It would however provide a firmer foundation upon which to experience the consequences of having or not having the test. While some interventions aimed at increasing women's knowledge about prenatal screening for Down syndrome have been shown to be effective,14 others have not.31,32 Interventions aimed at increasing knowledge need to be carefully developed to avoid increasing the existing knowledge gap between different ethnic and socioeconomic groups. One intervention shown to be effective at increasing knowledge for women with lower levels of education has been developed and evaluated in the context of screening for newborn hearing.33 This involves presenting information about a test face-to-face using a structured format, followed by a series of questions to check and where necessary enhance understanding on key points. The effectiveness of this intervention for informing women from varied cultural and social groups about screening for Down syndrome appears promising.
The univariate differences seen in women who classified themselves as ‘other’ in terms of ethnicity were not seen in the multivariate analysis, indicating either that the differences were accounted for by other demographic differences between the women or the number of women in this category was insufficient to determine the effects in a multivariate analysis.
Strengths and limitations
The strength of the current study is that it assesses the consistency between women's attitudes towards undergoing screening tests and their uptake of the screening test, using a standardized measure. Previous studies have evaluated either uptake without assessing attitudes or attitudes without assessing uptake. There are, however, several limitations to the study. First, women who were not literate in written English were not included in the study. It is difficult to assess how including these women might affect the results reported here. It may be that these women would have similar attitudes to women who completed questionnaires. If this is the case, the results presented here are likely to provide an accurate estimate of the rates of informed choice made by women who were not literate in English. Alternatively, if women who are not literate in English have different attitudes towards undergoing screening to women literate in English, the estimates of rates of informed choice would be an inaccurate assessment of rates in the population. Studies are now needed to assess the attitudes of women towards screening, regardless of their abilities to complete questionnaires.
A second limitation of the study is the measure used to assess socioeconomic status. There is an indication of a ‘ceiling effect’ in the measure because most women were classified in the highest group despite one of the hospitals being in an area with high levels of neighbourhood deprivation. A more sensitive measure may have been able to discriminate more finely between socioeconomic groups and thus may have shown a stronger association between socioeconomic status and informed choice. The measure used is an assessment of individual, not neighbourhood level deprivation. A fuller approach to measurement should include both. A further limitation of the study is that the ethnic groups amalgamated for analyses were wide and may have masked differences between them. For example the ‘South Asian’ group probably contains women from different religious groups with likely differing attitudes towards termination of pregnancy. However the range of attitudes expressed by South Asian women in this study, as assessed by standard deviation estimates, is similar to those expressed by other women in the study.
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Conclusion |
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This study shows that the lower uptake of antenatal screening for Down syndrome in minority ethnic groups and socioeconomically disadvantaged women does not reflect more negative attitudes towards screening as assessed by the Multi-dimensional Measure of Informed Choice, but seems to reflect lower rates of informed choice. To reduce the health gap between cultural and social groups, interventions need to be developed and evaluated for their effectiveness at first increasing the consistency between attitudes and behaviour and second at increasing knowledge. Such interventions are likely to be relevant in reducing social and cultural inequalities not only in the context of Down syndrome screening, but also in other screening programmes and more broadly, other health care contexts.
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Acknowledgments |
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We thank the women who participated in this study and the staff at the study hospitals. This study was funded as part of a programme grant (No 037006) from The Wellcome Trust (TMM is Principal Investigator). E.D. is funded by NHS R&D (RDC02020.
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Notes |
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2 Present address: Centre for Outcomes Research and Effectiveness Department of Psychology, University College London, Gower Street, London WC1E 6BT, UK.
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