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

Abstract

Background: Ethical practice requires that decisions to participate in medical care be well informed. Investigations into prenatal genetic screening for Down syndrome have assessed women’s knowledge but have not examined whether 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 women using 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 of Informed 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 made an informed decision than those who did not (P=0.01); 31% did not know that miscarriage was a possible consequence of diagnostic testing subsequent to an increased risk screening result and only 62% correctly identified that termination of pregnancy would be offered if Down syndrome were to be diagnosed. Short-term anxiety levels in 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 learning needs and attitudes of pregnant women, are needed. The impact of antenatal screening on other dimensions of pregnancy psychology remains to be investigated.