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Did I really want to know this?: Pregnant women's reaction to detection of a soft marker during ultrasound screening
(Allmänpediatrisk forskning/Nordvall)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. (Allmänpediatrisk forskning/Nordvall)
2010 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 81, no 1, 87-93 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To investigate women's expectations of routine ultrasound and experiences when soft markers were discovered: what the disclosure meant, how it affected them, how they experienced the information given and why they did or did not choose amniocentesis. Design: Semi-structured, in-depth interviews were conducted with 11 women 25-30 weeks into the pregnancy, 7-13 weeks after the discovery of a soft marker. Findings: Women lacked knowledge about the potential of the scan and detection of soft markers created strong emotional reactions that women thought could have been alleviated by prior information about potential findings. Information in connection with the scan was perceived as insufficient. Decision about amniocentesis was affected by attitudes to disability, anxiety about fetal loss due to the procedure, need for certainty by a diagnostic test, and partner's opinion. Conclusions: Women were shocked by the unexpected and sometimes unwanted information on elevated risk for a chromosomal aberration for which they lacked any preparation. Because this event often has long-lasting effects on the pregnancy, models of information that are efficient in promoting informed decisions are imperative. Practice implications: Both women and their partners need relevant information before and in connection with ultrasound scan to be able to make informed choices.

Place, publisher, year, edition, pages
2010. Vol. 81, no 1, 87-93 p.
Keyword [en]
Fetal ultrasonography, Ultrasonographic soft markers, Chromosomal aberrations, Ethical dilemmas, Psychological aspects
National Category
Medical and Health Sciences
URN: urn:nbn:se:uu:diva-134822DOI: 10.1016/j.pec.2009.12.011ISI: 000282070900015OAI: oai:DiVA.org:uu-134822DiVA: diva2:373917
Available from: 2010-12-02 Created: 2010-12-01 Last updated: 2014-04-29Bibliographically approved
In thesis
1. Pregnancy Ultrasound Detecting Soft Markers – the Challenge of Communicating Risk Figures
Open this publication in new window or tab >>Pregnancy Ultrasound Detecting Soft Markers – the Challenge of Communicating Risk Figures
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis focuses on expectant parents’ experiences and needs when soft makers are detected at mid-trimester ultrasound, resulting in an unexpected assessment of risk for fetal anomalies. The thesis also describes the prevalence of ultrasonographic fetal soft markers and the incidence of Down syndrome in a low-risk population of 10,535 pregnant women with a total of 10,710 fetuses, as well as the risk of invasive prenatal diagnostics in conjunction with the detection of soft markers. Finally, the thesis aims to explore the value of a web-based patient decision aid (DA) in facilitating informed decision making regarding routine fetal screening for anomalies and the fathers’ role in decision making regarding prenatal screening.

A prospective observational study was conducted between 2008–2011 to investigate the prevalence of ultrasonographic fetal soft markers at second trimester screening. During this time period, 12 women and 17 men were interviewed about their experience when soft markers were detected. Based on the results of these interviews, a web-based decision aid (DA) to enhance expectant parents’ decision-making concerning fetal screening was developed and a trial initiated to test its utility. Interviews were conducted with 17 women who received access to the DA, 11 who had chosen to use the DA and six who had not used it. All interview studies were analysed using systematic text condensation (STC) developed by Malterud.

Soft markers were detected in 5.9% of the fetuses at mid-trimester ultrasound, whereof 5.1% were isolated. All soft markers showed a positive likelihood ratio (LR+) for DS; however, the association was only statistically significant for the collapsed category ‘any marker’ (isolated, multiple or combined with anomaly), not for isolated markers. An almost 24-fold increase of invasive diagnostic testing was shown in all women, including those with a low estimated risk for aneuploidy, i.e. < 1/200 (paper III).

The results from interviews showed that the finding of soft markers created much anxiety and indicated that both women and men lacked awareness of the potential of the ultrasound examination (papers I and II). The results also showed that the men were actively engaged in decision making not only by supporting their partners, but also considered their own values and needs regarding these issues (paper II). It was also evident that women wanted their partners to be engaged in decisions regarding fetal diagnostics (papers I and IV).

The web-based patient DA was able to initiate a process of conscious decision making in pregnant women, as a result of their interaction with the tool. The DA allowed for clarification of women’s thoughts and priorities and helped them to understand the significance of the screening result and providing a basis for making informed decisions regarding fetal screening (paper IV).

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2014. 80 p.
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 985
Pregnancy, Ultrasound, Soft markers, Prenatal, Screening, Fathers, Informed decision making, Decision aid.
National Category
Other Medical Sciences
Research subject
Obstetrics and Gynaecology
urn:nbn:se:uu:diva-221142 (URN)978-91-554-8909-0 (ISBN)
Public defence
2014-05-08, Universitetshuset sal 9, Biskopsgatan 3, Uppsala, 13:15 (Swedish)
Available from: 2014-04-16 Created: 2014-03-25 Last updated: 2014-04-29

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