Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial

Bekker, Hilary; Hewison, Jenny; Thornton, Jim

doi:10.1002/pd.851

Cited by 123 publications

(175 citation statements)

References 46 publications

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“…However, these positive effects mainly applied to informed choice to accept prenatal screening. That informed choice is associated with less decisional conflict was also found by Michie et al 9 and Bekker et al, 20 and is contradictory to the suggestion of Green et al 11 that informed choice is associated with less decision satisfaction and increased anxiety. A limitation of this study is that the number of women whose prenatal test resulted in an increased risk of having a child with DS or NTDs was too small to incorporate them in the analysis, and therefore these cases had to be excluded.…”

Section: Discussioncontrasting

confidence: 50%

“…Therefore, every effort that can be made to increase the number of informed choices should be carried out. For instance, research has shown that decision aids are able to improve the quality and the level of informedness of prenatal testing decisions, 20 and such decision aids should be developed and implemented in the prenatal screening setting. Introducing prenatal screening for congenital defects as part of standard prenatal care should go hand in hand with an adequate system of informing and counseling women about prenatal screening to ensure informed decision-making.…”

Section: Discussionmentioning

confidence: 99%

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Are pregnant women making informed choices about prenatal screening?

Berg

Timmermans

Kate

et al. 2005

Genetics in Medicine

164

135

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Purpose: Prenatal screening should enable pregnant women to make informed choices. An informed decision is defined as being based on sufficient, relevant information and consistent with the decision maker's values. This study aims to assess to what extent pregnant women make informed choices about prenatal screening, and to assess the psychological effects of informed decision-making. Methods: The study sample consisted of 1159 pregnant women who were offered the nuchal translucency measurement or the maternal serum screening test.Level of knowledge, value consistency, informed choice, decisional conflict, satisfaction with decision, and anxiety were measured using questionnaires. Results: Of the participants, 83% were classified as having sufficient knowledge about prenatal screening, 82% made a value-consistent decision to accept or decline prenatal screening, and 68% made an informed decision. Informed choice was associated with more satisfaction with the decision, less decisional conflict (this applied only to test acceptors), but was not associated with less anxiety. Conclusion:Although the rate of informed choice is relatively high, substantial percentages of women making uninformed choices due to insufficient knowledge, value inconsistency, or both, were found. Informed choice appeared to be psychologically beneficial. The present study underlines the importance of achieving informed choice in the context of prenatal screening. Genet Med 2005:7(5):332-338.

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Section: Discussioncontrasting

confidence: 50%

Section: Discussionmentioning

confidence: 99%

Are pregnant women making informed choices about prenatal screening?

Berg

Timmermans

Kate

et al. 2005

Genetics in Medicine

164

135

View full text Add to dashboard Cite

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“…[10][11][12][13] Use of decision aids for prenatal counseling using structured, paper-based or basic electronic tools has been associated with less decision conflict, improved knowledge, and in some cases, increased uptake of prenatal testing. [14][15][16][17][18] Such tools can facilitate an improved informed consent process, yet few decision aids have been developed and evaluated in the United States, particularly for use in low literacy populations. 11 In 2009, Kuppermann et al showed that use of an interactive prenatal diagnostic decision tool resulted in better patient satisfaction, more decision certainty, and more accurate estimates of risk among women receiving prenatal genetic counseling.…”

Section: Introductionmentioning

confidence: 99%

A Randomized Trial of a Prenatal Genetic Testing Interactive Computerized Information Aid

Yee

Wolf

Mullen

et al. 2014

Obstetrical &Amp; Gynecological Survey

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OBJECTIVE-To determine whether an interactive computer program could improve patient knowledge regarding genetic screening and diagnostic concepts.METHODS-In this randomized trial, women 6-26 weeks' gestation were assigned to standard care with provider-based counseling or to augmented counseling with an interactive computer program. The computer-based tool conveyed information about genetic testing options. Women were administered a 23-item test of content knowledge immediately and 2-4 weeks after exposure. Test scores were compared between groups at both points using T-tests. RESULTS-150women were randomized equally between groups. Groups were similar with regard to demographic characteristics. Women randomized to the interactive tool correctly answered a significantly greater proportion of questions than those who received standard counseling (69.4% ±14.2% vs. 46.0% ± 15.2%, p<.001) on the immediate questionnaire. One hundred and twenty-three (82%) participants participated in the follow-up test. Women randomized to the tool continued to correctly answer a significantly greater proportion of questions (60.6% ± 16% vs. 49.7% ± 18.9%, p=.001). Education, health literacy, electronic health literacy, and other discussions with providers were not associated with a differential benefit from the educational intervention.

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“…To define informed decision-making, many different terms are used, often interchangeably [Summers, 1994;Marteau et al, 2001;Kohut et al, 2002;Bekker et al, 2004;Green et al, 2004;Rimer et al, 2004]. However, there is an emerging consensus that an informed decision has two core characteristics.…”

Section: Ethical Analysismentioning

confidence: 99%

“…There is consensus in ethical guidelines published in Europe and the United States that health professionals providing prenatal screening services should give prospective parents the information and support they need to make autonomous, informed decisions A process of informed decision-making results in informed decisions, also termed informed choices. To define informed decision-making, many different terms are used, often interchangeably [Summers, 1994;Marteau et al, 2001;Kohut et al, 2002;Bekker et al, 2004;Green et al, 2004;Rimer et al, 2004]. However, there is an emerging consensus that an informed decision has two core characteristics.…”

mentioning

confidence: 99%

Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective

Schoonen

Zee

Wildschut

et al. 2012

American J of Med Genetics Pt A

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In most Western countries, information on prenatal screening for Down syndrome is provided in the first-trimester of pregnancy. The purpose of this study was to examine whether this information should additionally be provided before pregnancy to improve the informed decision-making process. In an empirical study, we obtained data from pregnant women with respect to their preferences regarding information on prenatal screening preconceptionally. Questionnaire data (n ¼ 510) showed that 55.7% of responding women considered participating in prenatal screening for Down syndrome before pregnancy. 28.0% of women possessed information on prenatal screening preconceptionally. 84.6% preferred not to receive information preconceptionally in retrospect. In an ethical analysis, we elaborated on these preferences by weighing pros and cons. We considered two arguments against the provision of information on prenatal screening preconceptionally: women's preference to receive information in a step-by-step manner, and the risk of providing a directive message. We identified three reasons supporting its provision preconceptionally: the likelihood of making an informed decision could, firstly, be increased by ''unchaining'' the initial information from possible subsequent decisions, and, secondly, by providing women sufficient time to deliberate. Thirdly, the probability of equal access to prenatal screening may increase. To conclude with, we propose to incorporate an information offer on prenatal screening for Down syndrome in preconception care consultations. By offering information, instead of providing information, prospective parents are enabled to either accept or decline the information, which respects both their right to know and their right not-to-know. Key words: information on prenatal screening; down syndrome; preconception care consultation; informed decision-making; medical ethics; right not-to-know INTRODUCTIONPreconception care is a set of primary interventions that identify and modify biomedical, behavioral, and social risks to a woman's health and future pregnancies [Centers for Disease Control and Prevention (CDC). National Center on Birth Defects and Developmental Disabilities, 2006] Preconception care aims to optimize the health of the future child and to improve maternal health 485 [Health Council of the Netherlands, 2007b]. Information on prenatal screening for Down syndrome is commonly provided after conception, during the first-trimester of pregnancy. Many Western countries have policies or recommendations for prenatal screening for Down syndrome, in which either women of advanced age are offered invasive diagnostic testing (chorionic villus sampling or amniocentesis), or in which women, irrespective of their age, are offered non-invasive risk-assessment tests in the firsttrimester of pregnancy (nuchal scan, often combined with maternal serum evaluation) [Boyd et al., 2008;EUROCAT, 2010]. The latter screening tests provide an individual risk estimate of carrying a child with Down syndrome, and may be foll...

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Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial

Abstract: Decision analysis consultations enable women to make more informed prenatal diagnosis decisions. Professionals will need training to use this technique effectively.

Cited by 123 publications

References 46 publications

Are pregnant women making informed choices about prenatal screening?

Are pregnant women making informed choices about prenatal screening?

A Randomized Trial of a Prenatal Genetic Testing Interactive Computerized Information Aid

Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective

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