Does women’s place of birth affect their opportunity for an informed choice about Down syndrome screening? A population-based study in France.

Abstract Background To examine disparities in the opportunity to make an informed choice about Down syndrome screening by maternal place of birth, in France, where the French national authority for health (HAS) recommends that physicians offer it to all. We used population-based data from the nationally representative French Perinatal Surveys in 2010 and 2016 (N=24,644 women) to analyze the opportunity for an informed choice for prenatal screening, measured by a composite indicator. Results Among the 24 644 women in the study, 20 612 (83.6%) were born in France, 861 (3.5%) elsewhere in Europe, 1550 (6.3%) in North Africa, and 960 (3.9%) in Sub-Saharan Africa. The probability of screening was lower for women born outside France. After adjustment for survey year, maternal age, parity, education level, and level of perinatal care of the maternity, women born outside France had less often the opportunity to make an informed choice as compared with women born in France. This association remained essentially the same even after excluding women without adequate prenatal care. Conclusions Women born outside France, including those with adequate prenatal care, had less opportunity than women born in France to make an informed choice about prenatal screening for Down syndrome.

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Does women’s place of birth affect their opportunity for an informed choice about Down syndrome screening? A population-based study in France

BMC Pregnancy and Childbirth ◽

10.1186/s12884-021-04041-8 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Olivia Anselem ◽

Marie-Josèphe Saurel-Cubizolles ◽

Babak Khoshnood ◽

Béatrice Blondel ◽

Priscille Sauvegrain ◽

...

Keyword(s):

Down Syndrome ◽

Prenatal Care ◽

Prenatal Screening ◽

Perinatal Care ◽

Informed Choice ◽

Population Based ◽

Sub Saharan Africa ◽

Place Of Birth ◽

Adequate Prenatal Care ◽

Down Syndrome Screening

Abstract Background To examine disparities by maternal place of birth in the opportunity to make an informed choice about Down syndrome screening, in France, where the national guidelines recommend that physicians offer it to all pregnant women. Methods We used population-based data from the nationally representative French Perinatal Surveys in 2010 and 2016 (N=24,644 women) to analyze the opportunity for an informed choice for prenatal screening, measured by a composite indicator. Results Among the 24 644 women in the study, 20 612 (83.6%) were born in France, 861 (3.5%) elsewhere in Europe, 1550 (6.3%) in North Africa, and 960 (3.9%) in sub-Saharan Africa. The probability of screening was lower for women born outside France. After adjustment for survey year, maternal age, parity, education level, and the maternity unit’s level of perinatal care, women born outside France had the opportunity to make an informed choice less often than women born in France. This association remained essentially the same even after excluding women without adequate prenatal care. Conclusions Women born outside France, including those with adequate prenatal care, had less opportunity than women born in France to make an informed choice about prenatal screening for Down syndrome.

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Does women’s place of birth affect their opportunity for an informed choice about Down syndrome screening? A population-based study in France

10.21203/rs.3.rs-33585/v1 ◽

2020 ◽

Author(s):

Olivia Anselem ◽

Marie-Josèphe Saurel-Cubizolles ◽

Babak Khoshnood ◽

Béatrice Blondel ◽

Priscille Sauvegrain ◽

...

Keyword(s):

Down Syndrome ◽

Prenatal Care ◽

Prenatal Screening ◽

Perinatal Care ◽

Informed Choice ◽

Population Based ◽

Sub Saharan Africa ◽

Place Of Birth ◽

Adequate Prenatal Care ◽

Down Syndrome Screening

Abstract Objectives To examine disparities in the opportunity to make an informed choice about Down syndrome screening by maternal place of birth, in France, where the French national authority for health (HAS) recommends that physicians offer it to all. Material and methods We used population-based data from the nationally representative French Perinatal Surveys in 2010 and 2016 (N = 24,644 women) to analyse the opportunity for an informed choice for prenatal screening, measured by a composite indicator. Results Among the 24 644 women in the study, 20 612 (83.6%) were born in France, 861 (3.5%) elsewhere in Europe, 1550 (6.3%) in North Africa, and 960 (3.9%) in Sub-Saharan Africa. The probability of screening was lower for women born outside France. After adjustment for survey year, maternal age, parity, education level, and level of perinatal care of the maternity, women born outside France had less often the opportunity to make an informed choice as compared with women born in France. This association remained essentially the same even after excluding women without adequate prenatal care. Conclusion Women born outside France, including those with adequate prenatal care, had less opportunity than women born in France to make an informed choice about prenatal screening for Down syndrome.

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Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives

European Journal of Human Genetics ◽

10.1038/s41431-021-00940-8 ◽

2021 ◽

Author(s):

Karuna R. M. van der Meij ◽

Annabel Njio ◽

Linda Martin ◽

Janneke T. Gitsels-van der Wal ◽

Mireille N. Bekker ◽

...

Keyword(s):

Down Syndrome ◽

Pregnant Women ◽

Prenatal Screening ◽

Screening Program ◽

Informed Choice ◽

Aneuploidy Screening ◽

Non Invasive ◽

Fetal Aneuploidy ◽

Societal Pressure ◽

Prenatal Test

AbstractDue to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.

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Attitude, knowledge and informed choice towards prenatal screening for Down Syndrome: a cross-sectional study

BMC Pregnancy and Childbirth ◽

10.1186/s12884-018-2077-6 ◽

2018 ◽

Vol 18 (1) ◽

Cited By ~ 1

Author(s):

Melania Elena Pop-Tudose ◽

Dana Popescu-Spineni ◽

Petru Armean ◽

Ioan Victor Pop

Keyword(s):

Down Syndrome ◽

Prenatal Screening ◽

Informed Choice ◽

Cross Sectional Study ◽

Sectional Study ◽

Cross Sectional

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Informed choice in antenatal Down syndrome screening: A cluster-randomised trial of combined versus separate visit testing

Patient Education and Counseling ◽

10.1016/j.pec.2005.02.006 ◽

2006 ◽

Vol 61 (1) ◽

pp. 56-64 ◽

Cited By ~ 50

Author(s):

Elizabeth Dormandy ◽

Susan Michie ◽

Richard Hooper ◽

Theresa M. Marteau

Keyword(s):

Down Syndrome ◽

Randomised Trial ◽

Informed Choice ◽

Cluster Randomised Trial ◽

Cluster Randomised ◽

Down Syndrome Screening

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Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid

JMIR Research Protocols ◽

10.2196/resprot.4291 ◽

2015 ◽

Vol 4 (3) ◽

pp. e113 ◽

Cited By ~ 3

Author(s):

Mette Maria Skjøth ◽

Helle Ploug Hansen ◽

Eva Draborg ◽

Claus Duedal Pedersen ◽

Ronald F Lamont ◽

...

Keyword(s):

Down Syndrome ◽

Pregnant Women ◽

Decision Aid ◽

Screening Program ◽

Informed Choice ◽

Care Providers ◽

Patient Decision Aid ◽

Web Based ◽

Patient Decision ◽

Down Syndrome Screening

Background In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. Objective The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. Methods The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. Results Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. Conclusions This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.

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