Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the Multidimensional Measure of Informed Choice

Australian and New Zealand Journal of Obstetrics and Gynaecology 2006; 46: 433–439

© 2006 The Authors 433Journal compilation © 2006 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists

Blackwell Publishing Asia Original ArticleInformed decisions in prenatal genetic screening

Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the Multidimensional

Measure of Informed Choice

Heather J. ROWE,1 Jane R. W. FISHER1 and Julie A. QUINLIVAN2

1Key Centre for Women’s Health in Society, School of Population Health, University of Melbourne, Melbourne, Victoria, 2Faculty of Medicine, Notre Dame University Australia, Sydney, New South Wales, Australia

AbstractBackground: Ethical practice requires that decisions to participate in medical care be well informed. Investigationsinto prenatal genetic screening for Down syndrome have assessed women’s knowledge but have not examinedwhether being well informed about the potential consequences of screening, such as subsequent diagnostic testing,diagnosis and termination, is associated with psychological distress for women.

Aims: To assess informed choice to participate in second trimester maternal serum screening (2MSS) in pregnant womenusing a validated measure and to compare anxiety levels in women who were well informed versus poorly informed.

Methods: A prospective cohort study where pregnant women completed the Multidimensional Measure ofInformed Choice and the Hospital Anxiety and Depression Scale immediately prior to the offer of 2MSS.Follow-up questionnaires assessing psychological symptomatology were completed at 20 and 30 weeks gestation.

Results: Only 37% of decisions were informed; those who participated in screening were more likely to have madean informed decision than those who did not (P = 0.01); 31% did not know that miscarriage was a possibleconsequence of diagnostic testing subsequent to an increased risk screening result and only 62% correctly identifiedthat termination of pregnancy would be offered if Down syndrome were to be diagnosed. Short-term anxiety levelsin those who were well informed were not significantly different from those who were poorly informed (P = 0.14).

Conclusions: Health promotion strategies, which are readily applicable in clinical settings and address diverse learningneeds and attitudes of pregnant women, are needed. The impact of antenatal screening on other dimensions ofpregnancy psychology remains to be investigated.

Key words: anxiety, genetic screening, informed consent, mental health, prenatal care.

Introduction

Screening tests suitable for use in population-based programshave been developed in an attempt to increase the antenataldetection rate of Down syndrome and other fetal trisomies.These screening tests include maternal serum screening forbiochemical markers of chromosomal abnormality, which isused alone in the second trimester (2MSS), or in combinationwith a nuchal translucency ultrasound scan in the first trimester,the first trimester combined screen (1TCS). In Victoria, 2MSSwas introduced in 1996 and 1TCS in 2000. Results of thesescreening tests are presented as estimates of risk of abnormality,and those with increased risk are offered diagnostic testing usingchorion villus sampling or amniocentesis. Second trimester maternalserum screening is available free of charge in public antenatalcare in Victoria,1 and 1TCS is offered on a fee-for-service basis.Profoundly important decisions about whether to continue orterminate a pregnancy are based on results of diagnostic tests.

Screening enables diagnostic tests to be targeted moreeffectively,2 which is beneficial because diagnostic tests areinvasive and carry a small risk of miscarriage. Non-invasivescreening tests are potentially offered to all women, includingyounger women who may not be aware that they are also atrisk of having a baby with Down syndrome. The proportionof diagnostic tests performed in Victoria subsequent to anabnormal screening test result has increased, from 13% in1996 to 30% in 2004, subsequent to either 2MSS or 1TCS.3

Correspondence: Dr Heather J. Rowe, Key Centre for Women’s Health in Society, School of Population Health, University of Melbourne, Vic. 3010, Australia. Email: [email protected]

DOI: 10.1111/j.1479-828X.2006.00630.x

Received 23 March 2006; accepted 21 June 2006.

H. J. Rowe et al.

434 © 2006 The AuthorsJournal compilation © 2006 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists; 46: 433 –439

The proportion done for advanced maternal age is decliningand the number being performed in younger women isincreasing.4 Current estimates are that 2MSS detects about85% of fetuses with Down syndrome, for a false-positive rateof 6.8% and a positive predictive value of 2%. Approximately97% of test results are normal.5

International public health policies have moved from anemphasis on universal uptake of screening tests to individualsmaking an informed choice to participate.6 The JointCommittee of the Human Genetic Society of Australasia/RoyalAustralian and New Zealand College of Obstetricians andGynaecologists (HGSA/RANZCOG) Committee recommendsthat all pregnant women be informed of the availability ofprenatal genetic screening tests, and that care providersdiscuss with women the relative test performances and theiradvantages and disadvantages.7 Best practice guidelines forscreening stress informed, autonomous decision-making.1

Psychosocial dimensions of prenatal genetic screening havebeen investigated and large-scale evaluations of population-based prenatal genetic screening services should not belimited to considerations of test performance.8 The JointHGSA/RANZCOG Committee recommends that women’sunderstanding of and satisfaction with screening methodsshould be ascertained.7

There is a large amount of information relating to thedifferent screening tests available, their relative performancesand the options available after test results are known, whichneed to be evaluated by individual women prior to makingan informed choice to participate in screening. Womenwho use prenatal genetic testing also place a high valueon services that enable them to make a voluntary andwell-informed choice.9

In Australia as elsewhere, there is a gap between thepolicy of informed participation and practice. Knowledgeand understanding of test characteristics among women10

and health professionals11 may be poor. A recent large-scalesurvey in Victoria found that 46% of women who had screen-ing did not know that the test was for the detection of Downsyndrome.12 The attitudes of health-care providers are powerfuldeterminants of the uptake of prenatal genetic screening13 andscreening offered as part of standard care may not providesufficient opportunity for women to make an independentdecision about participation.14

Research that has investigated informed decision-makinghas paid most attention to the provision of appropriateinformation. However, an informed choice or decision is basedon more than high quality information; it also reflects thedecision-maker’s values. The Multidimensional Measure ofInformed Choice (MMIC)15 is a validated measure of informedchoice, which assesses both knowledge and attitude dimensions.The measure also confirms whether or not an individualwoman’s participation in the test matches her attitude to thetest. Emotional factors may also influence autonomousdecision-making, but have received little research attention.For example, anxiety is commonly elevated in early pregnancy,16

but the way in which heightened anxiety impairs cognitivefunctioning and therefore the capacity to comprehend complexinformation remains underexamined.

The emphasis in health policy on informed decision-making is predicated on a belief that an informed decisionis associated with better outcomes than an uninformed one.This assumption has received little empirical investigationin prenatal or other types of testing, nor have there beenadequate measures of what informed decision-making actuallyconstitutes.17 This question is especially salient in decisionsabout prenatal screening, which occur in the context of adeveloping relationship with the unborn baby. It may be thatwomen who undertake screening as part of routine antenatalcare knowing little about the test (one of the elements relatedto uninformed decisions to participate) will experiencelittle anxiety related to testing. However, those women whoparticipate in screening with full knowledge of the test and itsimplications (informed decision to participate) may experiencethe wait between the test and its result as a time of elevatedanxiety especially about the health of the fetus. Conversely,it may be that women who are well informed about screeningfind the opportunity to assess the fetus for chromosomalnormality reassuring and experience lower rates of anxiety thanother women who are unaware that a test is able to providethis kind or reassurance. The resolution of this uncertaintyhas clinical implications for the way in which informationabout prenatal screening is presented to individual women,including whether it is paired with assessment of currentmood state.

The aim of the present study was to establish, using theMMIC, the extent to which decisions to participate inprenatal genetic screening in Australia are well informed.Second, it was to investigate systematically whether informeddecision-making is associated with measures of better moodin pregnancy than uninformed decisions.

Methods

Approval to conduct the study was obtained from the Researchand Ethics Committee of the Royal Women’s Hospital,Melbourne, Victoria, Australia. Participants were pregnantwomen, with sufficient English to complete written question-naires and between eight and 14 weeks gestation, attendingtheir first hospital visit, who had not already had prenatalgenetic screening or testing in this pregnancy. Recruitmenttook place at four public antenatal clinics, representing avariety of models of maternity care (in-hospital pregnancyclinic, outreach clinic, shared general practitioner care,and birth centre), at the Royal Women’s Hospital, a tertiaryreferral centre for obstetrics, between January 2003 andDecember 2004. All women attending antenatal clinicsreceived oral and written descriptions of the study, and thosewho were eligible and agreed to participate signed a standardconsent form.

Measures

Structured self-report questionnaires incorporated thefollowing standardised, validated, published, psychometricself-report instruments.

Informed decisions in prenatal genetic screening

© 2006 The Authors 435Journal compilation © 2006 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists; 46: 433–439

The Multidimensional Measure of Informed Choice15

assesses informed choice to undergo second trimester maternalserum screening. An eight-item subscale assesses knowledgeof the purpose and performance of the test and implications ofhigh-risk results for the management of pregnancy. Decisionsregarding uptake of 2MSS are scored on this subscale as‘well informed’ (> 4) or ‘poorly informed’ (≤ 4). A four-itemsubscale assesses a woman’s attitude regarding the perceivedbenefits and importance of undergoing screening in hercurrent pregnancy. Attitude towards the test is scored as‘positive’ (> 12) or ‘negative’ (≤ 12) on this subscale. Bothsubscales have good reliability (α = 0.68 and 0.78, respectively).18

One item records test uptake.The Hospital Anxiety and Depression Scale (HADS)19 is a

widely used 14-item, published, self-report instrument,consisting of two subscales, designed for detecting states ofdepression and anxiety in hospital medical outpatients, withgood reliability (HADS – anxiety (A) α = 0.75 and – depression(D) α = 0.74). It is a useful tool for assessment of mood inpregnancy because it does not contain items relating tophysical symptoms and distinguishes specifically betweenanxiety and depression. Scores over ten on each subscale areregarded as probable cases in the clinical range.

Procedures

A prospective longitudinal study was conducted, where partici-pants were assessed three times during pregnancy.

First assessment

During their hospital visit, participants completed a shortself-report questionnaire assessing sociodemographic detailsand reproductive health. Psychological functioning andinformed choice to undergo 2MSS were assessed using theHADS and the MMIC.

Second assessment

Contact was made by telephone at approximately 20 weeksgestation after participants had participated (or not) in 2MSS.A postal questionnaire included the HADS and questionsabout test uptake and, where applicable, test result.Completed questionnaires were returned to researchers inreply paid envelopes.

Third assessment

When women were approximately 30 weeks pregnant, theHADS was readministered using a postal questionnaire.

Power calculation and statistical analysis

On the assumption that approximately one-third of womenwould be informed about 2MSS, two groups of 33 and 75women each (informed and not informed) were required forthe final sample of 108 women. This sample size had sufficientpower to detect an increase or decrease (two tailed) of four

points (SD = 0.6 of a point20) on the HADS (α = 0.05, power80%), between those whose decision regarding screeningwas informed compared to not informed. To allow for upto 30% loss to follow up by the time of the final interview,including 1–2% miscarriage rate, 154 women were required.

Data were analysed using version 12.21 Descriptivestatistics are reported as mean (standard deviation) fornormally distributed variables and median (interquartile range)for data which were significantly skewed or kurtotic. Univariatecomparisons employed χ2 tests for discrete data. The Wilcoxonsigned rank test (Z) or Friedman’s test was used to testcorrelations between non-normally distributed variables inrelated samples. Group comparisons of psychological outcomeswere adjusted for repeated measures.

Results

In the four antenatal clinics, 184 women met the inclusioncriteria and were invited to participate. A total of 134women signed a standard consent form and returned thefirst questionnaire (mean recruitment rate 80.2%). Eightyfive (63.9%) of the original sample returned the secondquestionnaire and 77 (57.8%) returned the third.

The sociodemographic characteristics of the sample aredisplayed in Table 1 and represent a broad range of socio-economic status and level of education.

Informed choice

The mean (SD) score of the sample on the knowledgesubscale of the MMIC was 4.4 (2.0) and mean (SD) scoreon the attitude subscale was 20.2 (6.3). Using this measure,only 65 (48.1%) women were classified as having ‘goodknowledge’ (knowledge score > 4). However, 116 (87.2%) ofthe sample was classified as having a positive attitude toscreening (attitude score > 12).

Of the 85 participants at assessment two, 53 (62.4%)reported having had the 2MSS test. Three (5.7%) of the 53test results were returned as ‘increased risk’. Twenty women(37.7%) reported that they had not been told automaticallyof the test result. These women either asked the doctor ormidwife for the result or relied on the presumption that ‘nonews is good news’. Of the 32 women who did not have thetest, six (19.4%) reported not having been offered it, and onewoman had miscarried. Eighteen women (58.1%) declinedthe test because they would not consider termination ofthe pregnancy, six (19.4%) regarded themselves as at lowrisk of having a baby with Down syndrome, and four(12.9%) women assessed the false-positive rate of the testas unacceptably high.

Combining these subscales reveals that overall 31 (37.3%)decisions to participate in 2MSS were ‘informed’. The distri-bution of the categories of decisions is shown in Table 2.

Those who participated in screening were more than twiceas likely to have made an informed choice than those whodid not participate (25/53, 47% vs 6/30, 20%; = 6.04,P = 0.01). Informed decisions were not significantly associated

χ12

H. J. Rowe et al.


with participant’s age (t = −1.93, P = 0.058), country of birth(Australia or overseas; = 0.02, P = 0.54), gravidity ( =0.68, P = 0.28), or whether the pregnancy was unexpected( = 0.23, P = 0.41) or unwelcome ( = 0.60, P = 0.63).

There was no significant association between the levelof knowledge and attitude to the test ( = 0.77, P = 0.27),although those with knowledge scores above four were signi-ficantly older (t = 3.55, P = 0.002) and had higher levelsof education ( = 9.13, P = 0.002) than those with scoresbelow four. Item analysis of the MMIC revealed some importantmisconceptions particularly regarding altered managementof the pregnancy should an increased risk result be returnedfrom the 2MSS test. Women will be offered diagnostic testing

under these circumstances, but 42 of the 133 (31%) participantsdid not know that miscarriage was a possible consequence ofamniocentesis. Furthermore, the consequences of a diagnosisof Down syndrome were not well understood. When asked whata woman would be offered if Down syndrome were diagnosedin her fetus, 8/133 (6%) endorsed an item stating that ‘immediatetreatment for the baby’ would be offered and 24/133 (18%)endorsed an item that the woman would have access to ‘anothertype of test’. A further 38 of the 133 (29%) participants wereunsure what the options would be and therefore what decisionswould be faced. Only 82 of the 133 (62%) participants correctlyidentified that termination of pregnancy would be offered inthis circumstance.

χ12 χ1

2

Table 1 Characteristics of study sample (n = 134)

Characteristic Study sample Victoria (2003–2004)†

Mean (SD) participant age (years) 29.1 (4.7) 31.0Marital status (%)

Married or de facto 89.6 86.5Participant’s country of birth (%)

Australia 77.8 76.1Primigravid percentage 36.6 32.2Highest level of education (%)

Part secondary 4.5Secondary 34.1Post-secondary training 20.5Undergraduate degree 28.8Postgraduate degree 12.1

Occupation (%)‡Professional 25.8Associate professional/trade 18.9Intermediate clerical/service 41.7Elementary service/labourers 11.4Student/unemployed 2.3

Mean (SD) gestation at recruitment (weeks) 12.3 (2.0)Previous miscarriage %

Yes 26.3Did not answer 0.7

Previous termination of pregnancy %For fetal abnormality 3.8For other reasons 21.1Did not answer 0.7

Attitude to current pregnancy %Very pleased 71.6Pleased but inconvenient 2.2Pleased but worried 14.9Mixed feelings 9.7Unhappy but getting used to it 0.7Rather it had not happened 0.7

Pregnancy planning %No, unexpected 28.4Yes, timing about right 56.0Yes, but spent a long time trying 11.9Yes, ART conception§ 3.7 2.7§

†Births in Victoria 2003–04.23

‡ASCO, Australian Standard Classification of Occupations.24

§ART, assisted reproductive technology; Infertility Treatment Authority.25

χ12 χ1

2

χ12

χ12



Psychological symptomatology

Results of the HADS are presented in Table 3. There was asignificant positive correlation between depression andanxiety at each time point (Wilcoxon signed ranks test: time

one, Z = −5.63, P < 0.001; time two, Z = −5.03, P < 0.001; timethree, Z = −3.34, P < 0.001). Individual scores were highlycorrelated over time (Friedman test = 13.96, P < 0.001)and adjusting for this, there were no significant differencesbetween scores at any time point (Wilcoxon signed ranks testfor anxiety: times one and two, Z = −1.85, P = 0.064; timestwo and three, Z = −1.89, P = 0.06; times one and three,Z = −1.45, P = 0.14).

At time one (mean (SD) gestation = 12.3 (2.0)), scores onthe HADS(A) and HADS(D) subscales and proportions ofwomen with scores in the probable clinical range were similarto those in a validation sample assessed at a similar gestation,22

and to those in a cohort of adult pregnant women recruitedin the same setting as the current study.20

There was no significant difference between informed andnot informed groups in psychological outcomes at any of thethree assessments after adjusting for repeated measures on indi-vidual participants. This could not be done non-parametrically,but parametric approximation was calculated (for anxiety F2,63

= 1.98, P = 0.14). These results are displayed in Table 4.

Discussion

The principle of informed participation in medical proceduresis regarded as central to modern health care. This study isthe first of its kind in Australia to assess implementationof a policy of informed decision-making in prenatal geneticscreening, using a validated measure of informed choice, ina systematically recruited sample of women attending forantenatal care in a large public hospital, which is of adequatesize to answer the research question. The sample is broadlyrepresentative, but may have an overrepresentation of womenwho declined the 2MSS test. This is because those who hadalready participated in combined first trimester screen(NTUS/1MSS) by the time of recruitment to the currentstudy were not eligible for participation. Therefore, thoseremaining eligible may have been more likely to be decliners.

The striking finding of this study is that, despite a policyof provision of oral and written information to all womenregarding 2MSS, only 37% made an informed choice toparticipate. It can be speculated that factors relating toclinicians, the health system and patients may be pertinentexplanations for this finding. First, it has been demonstratedin Australia and internationally that health providers themselves

Table 2 Informed decisions to participate in second trimestermaternal serum screening (n = 83)

n (%)

Well-informed decisions1Good knowledge 25 (30.1)Positive attitudeTakes up the test2Good knowledge 6 (7.2)Negative attitudeDeclines the testTotal 31 (37.3)Poorly informed decisions1Poor knowledge 4 (4.8)Negative attitudeDeclines the test2Poor knowledge 1 (1.2)Negative attitudeTakes up the test3Poor knowledge 11 (13.3)Positive attitudeDeclines the test4Poor knowledge 27 (32.5)Positive attitudeTakes up the test5Good knowledge 9 (10.8)Positive attitudeDeclines the test6Good knowledge 0 (0)Negative attitudeTakes up the testTotal 52 (62.7)

Table 3 Psychological symptomatology over pregnancy course

Time 1 n = 134 Time 2 n = 85 Time 3 n = 68

Median IQRScore > 10

n (%) Median IQRScore > 10

n (%) Median IQRScore > 10

n (%)

HADS T 9.5 6–13 7 5–12 7.5 5–13HADS A 6 3–8 11 (8.2) 4 3–7 7 (8.2) 4.5 2.3–7 7 (10.3)HADS D 3 2–6 3 (2.2) 3 1.5–5 1 (1.2) 3 2–5.8 2 (2.9)

Mean (SD) gestation at time 1 = 12.3 (2.0); time 2 = 22.2 (8.5); time 3 = 31.4 (2.2).HADS T, Hospital Anxiety and Depression Scale – total score; HADS A, Hospital Anxiety and Depression Scale – anxiety subscale; HADS D, Hospital Anxiety and Depression Scale – depression subscale; IQR, interquartile range.

H. J. Rowe et al.


are not well informed about the tests,11 and may lack theskills necessary to convey complex information in the contextof an antenatal visit. Second, there are inevitable timeconstraints in antenatal visits; competing demands forexplanations about a range of other tests suggest that ensuringuniversal informed choice within routine antenatal clinicalcare might not be attainable. Third, the relatively high levelsof anxiety experienced by pregnant women themselves, inparticular about salient infant-related factors, may limit theway in which information can be comprehended and used atthis time. Both acquisition and retention of new informationare less likely to occur when people are anxious.

It is clear from these findings that decision-making inthis context is complex and may be oversimplified in currentpractice, which presumes that a single approach is suitable forall women. Pregnant women have differing needs for informa-tion when making decisions about participation in screening.For example, the category ‘poorly informed 1’ (Table 2)describes women who have a negative attitude to testingand who do not have the test, but whose knowledge is poor.Arguably, this is an ‘informed decision’, because they electnot to have the test under any circumstance and therefore donot need to know details about it. Alternatively, it may be thatsome women employ denial or avoidance as a means ofmanaging anxiety-arousing information. The psychologicalimplications for women of avoidance or denial, which areregarded as ineffective coping mechanisms, in the event ofan elevated risk result of the test remain unknown.

It appears from these findings that in the short term, self-reported symptoms of depression and anxiety are not directlyrelated to whether the decision to participate in prenatal geneticscreening is well or poorly informed. However, longerterm effects remain unknown. It is well documented thatspecific anxiety, in particular about fetal well-being, is elevatedin most pregnant women and is obdurate and not readilymodified. Informed choice in prenatal genetic screening does

not appear to influence it. There may, however, be effects onother dimensions of psychological functioning, including thequality and intensity of a women’s emotional relationshipwith her fetus and the maintenance of a therapeutic alliancewith treating clinicians, which warrant specific investigation.

The generally poor understanding of important features ofthe test in women who participate is of serious concern, becauseit indicates that they are unlikely to be prepared for the complexdecision-making that follows communication of an increased riskestimation. The ethical implementation of population-basedscreening programs requires that the possible consequences forpregnancy management of participation are conveyed to thesewomen effectively and with psychological sensitivity.

Conclusions

This study provides further Australian evidence that manywomen participating in prenatal genetic screening areinadequately informed regarding aspects of testing, includingthe management of pregnancy in the event of an increasedrisk result. Whether or not decisions were informed wasnot associated with differences in measures of depressionand anxiety. Strategies to improve the quality of educationfor clinicians so that they are able to convey the necessarycomplex information effectively and sensitively, and thedevelopment of participant information that meets diverselearning capacities and takes into account the effects ofpregnancy related elevations in anxiety, are needed.

Acknowledgements

Ms Amy Timoshanko provided research assistance and thestudy was funded by a grant from the Faculty of MedicineDentistry and Health Sciences, University of Melbourne.

Table 4 Differences in psychological symptomatology (HADS) by informed choice

Time 1 n = 83 Time 2 n = 83 Time 3 n = 68Informed n = 31 Informed n = 31 Informed n = 26

Median IQR P Median IQR P Median IQR P

HADS TInformed

Yes 10 6–14 0.53 6 3–11 0.15 6.5 4.8–13.8 0.52No 9 6–12 8 6–12.8 8 5.3–14.5

HADS AInformed

Yes 5 3–9 0.94 3 2–7 0.13 4 2.3–9 0.81No 6 3–8 5 4–7 5 2–7

HADS DInformed

Yes 4 2–7 0.18 2 1–4 0.53 3 2–5.3 0.40No 3 2–5 3 1.3–5 4 2–7

Mean (SD) gestation at time 1 = 12.3 (2.0); time 2 = 22.2 (8.5); time 3 = 31.4 (2.2).HADS T, Hospital Anxiety and Depression Scale – total score; HADS A, Hospital Anxiety and Depression Scale – anxiety subscale; HADS D, Hospital Anxiety and Depression Scale – depression subscale; IQR, interquartile range.



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Documents

Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the Multidimensional Measure of Informed Choice