Down Syndrome: what do pregnant women know about their individual risk? A prospective trial

Strauß, Alexander; Heer, I. M.; Spelsberg, F; Strauss, Carolin

doi:10.1007/s00404-012-2707-6

Cited by 5 publications

(4 citation statements)

References 18 publications

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“…Consistent with a previous study [ 28 ], the women’s preference or self-risk assessment was independent of maternal age, education or parity. Less than half of the women replied that their information on NIPT was received from their private doctors, while nearly half of women learned it from the web.…”

Section: Discussionsupporting

confidence: 88%

“…Although Nullipara and employed women are associated with the use of NIPT, our present study did not show that these subgroups of women knew more about NIPT than Multipara and the unemployed. It seems that the need for adequate pre-test counselling of women is not limited to particular subgroups [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

“…Less than half of the women replied that their information on NIPT was received from their private doctors, while nearly half of women learned it from the web. Self-risk assessment was influenced largely by counselling by health-care professionals and the media apart from personal experience [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

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Knowledge and future preference of Chinese women in a major public hospital in Hong Kong after undergoing non-invasive prenatal testing for positive aneuploidy screening: a questionnaire survey

Kou

Poon

Tse

et al. 2015

BMC Pregnancy Childbirth

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BackgroundDespite the non-invasive nature of non-invasive prenatal testing (NIPT), there is still a need for a separate informed consent process before testing. The objectives of this study are to assess (a) knowledge and preferences of Chinese women in a major public hospital in Hong Kong who underwent NIPT, and (b) whether their knowledge and preferences differ depending on womens’ characteristics and sources of information.MethodsSetting: prenatal diagnosis and counselling clinic.Between February 2012 and September 2013, a questionnaire survey was distributed to all women who underwent NIPT after positive aneuploidy screening. As a pilot study, ten knowledge questions were designed based on the rapid response statement on Prenatal Detection of Down Syndrome using Massively Parallel Sequencing from the International Society for Prenatal Diagnosis in 2011. The source of women’s knowledge and their preferences were also evaluated. While conventional screening was publicly funded, NIPT was not. Differences between subgroups were compared using chi square tests and logistic regression analysis.ResultsOf 152 women who underwent NIPT, 135 (88.8 %) completed their questionnaires. More than 90 % of women recognised the possibility of false positive and false negative results. Slightly more than 70 % of women knew the inferior sensitivity of NIPT compared to an invasive test, and the possibility of an uninformative test result, but were not aware of the complicated aspects of NIPT. Pregnant women with an advanced level of education or those who underwent NIPT before 15 weeks provided answers that was more accurate by around 10-20 % in two to three knowledge questions than those without. These associations were confirmed by multivariate logistic regression analysis. The women received information on NIPT largely from their private doctors (47.4 %) and web (41.5 %). In their future pregnancies, more women would opt for NIPT (a self-financed item) after positive screening (‘free’ in a public hospital) (57.8 %) than as a primary screening (30.4 %).ConclusionsIt is feasible to use a questionnaire based on the ISPD statement on NIPT to assess women’s knowledge of the test. The Chinese women who underwent NIPT recognised the limitations, but did not understand the complicated aspects. More information should be provided by health care professionals in order to facilitate an informed choice by patients. More women preferred NIPT as a contingent test than as a primary screening probably because of its high cost.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

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Knowledge and future preference of Chinese women in a major public hospital in Hong Kong after undergoing non-invasive prenatal testing for positive aneuploidy screening: a questionnaire survey

Kou

Poon

Tse

et al. 2015

BMC Pregnancy Childbirth

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“…There have been numerous studies on how prenatal screening is communicated to patients and one major issue is the woman's understanding of what a screening test actually is (Nagle et al 2008;Rostant et al 2003). Understanding the test is essential for a woman to make a truly informed decision about whether to have the test and understanding can vary widely among women (Rowe et al 2006;Strauss et al 2013). Interestingly, this study suggests that when women are asked to give an explanation of screening versus diagnostic most are able to do so, and asking women of their understanding helps to differentiate screening and diagnosis for the client.…”

Section: Discussionmentioning

confidence: 99%

Women's Understanding and Attitudes towards Down Syndrome and Other Genetic Conditions in the Context of Prenatal Screening

Long

O’Leary

Lobo

et al. 2017

Journal of Genetic Counseling

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In order to explore the impact of potential new technologies in the area of prenatal screening, we conducted a baseline study using qualitative interviews to explore women's attitudes and knowledge regarding current and future prenatal screening technology and methods. Three cohorts were interviewed, including healthy women without children, healthy women with healthy children, and healthy women with children who have de novo genetic disorders. This study aimed to assess the baseline understanding and attitudes of women in Western Australia. Women from each cohort demonstrated adequate knowledge of the differences between screening and diagnostic tests, but were mostly unaware of the conditions for which screening is currently available except Down syndrome. Women who had children with de novo genetic conditions were generally aware of more genetic conditions than women with or without healthy children. Most women recognised the genetic basis for the conditions mentioned. Two thirds of women understood that Down syndrome is a chromosomal condition; just one third recognised that the phenotype is variable. Most women expressed a positive attitude towards Down syndrome. Social acceptance of children with Down syndrome was commonly mentioned as a concern. While the majority of women with children supported screening for Down syndrome, they emphasised that it must be an autonomous choice. General knowledge of genetic conditions illustrated that women are exposed to diverse conditions from lived experience as well as the media.

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Évaluation des connaissances des patientes concernant le dépistage de la trisomie 21 lors de l’échographie du premier trimestre : résultats d’un sondage prospectif sur un échantillon de 201 femmes

Montlaur

Desseauve

Maréchaud

et al. 2016

Journal de Gynécologie Obstétrique et Biologie de la Reproducti

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Down Syndrome: what do pregnant women know about their individual risk? A prospective trial

Cited by 5 publications

References 18 publications

Knowledge and future preference of Chinese women in a major public hospital in Hong Kong after undergoing non-invasive prenatal testing for positive aneuploidy screening: a questionnaire survey

Knowledge and future preference of Chinese women in a major public hospital in Hong Kong after undergoing non-invasive prenatal testing for positive aneuploidy screening: a questionnaire survey

Women's Understanding and Attitudes towards Down Syndrome and Other Genetic Conditions in the Context of Prenatal Screening

Évaluation des connaissances des patientes concernant le dépistage de la trisomie 21 lors de l’échographie du premier trimestre : résultats d’un sondage prospectif sur un échantillon de 201 femmes

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