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

Abstract

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.

Effect of non-invasive prenatal testing as a contingent approach on the indications for invasive prenatal diagnosis and prenatal detection rate of Down's syndrome

“…We suggest giving more information by health care professionals, preferably trained midwives, so that patients can make an informed choice. 37 The limitations of the present study included its retrospective nature, single-centre, and small sample size. The actual performance of NIPT could not be examined as not all eligible subjects were tested.…”

“…20,35 Major governing or professional bodies recommend NIPT in the context of informed consent, education, and pre-and post-test counselling. [29][30][31][32]36 In our previous study, 37 we showed that Chinese women who underwent NIPT recognised the limitations, but did not understand the complicated aspects. We suggest giving more information by health care professionals, preferably trained midwives, so that patients can make an informed choice.…”

Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

“…A study in Hong Kong showed that signifi cantly more women would opt for self-funded NIPT as a contingent second-line test, rather than a fi rst-line test, after a cFTS (freely available in public hospitals). (38) In Singapore, a cFTS costs SGD 270 for a private patient and SGD 130 for a subsidised patient. Thus, it is possible that the same outcome would be seen in Singapore if patients were given these options.…”

“…A study in Hong Kong showed that patients were able to understand the limitations of NIPT, with more than 90% of patients appreciating the potential for false-negative and false-positive results, but being less knowledgeable on the more complicated aspects. (38) In order to provide stakeholders with the comprehensive knowledge they desire, a greater range of disorders will have to be added to the NIPT panels. There have been concerns that this would result in women having to assimilate too much information prior to giving proper informed consent.…”

Stakeholder attitudes and needs regarding cell-free fetal DNA testing

“…The first studies to measure informed decision making [19 & ] or assess contributing factors such as knowledge [20,44] when offering NIPT in clinical practice are now emerging. A study from the United Kingdom looking at the introduction of NIPT into the state-funded National Health Service (NHS) used a formal measure of informed choice and found rates of informed choice were high (89%) in 585 women offered NIPT.…”