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Table 4 Quotes from interviews or focus groups after receiving NIPT results

From: Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review

Study Number of participating women Quotes of participating women Results
Vanstone, et al., 2015, Candada [25] N = 38 women at high risk for fetal aneuploidy; here, only quotes of women who clearly were interviewed after NIPT are considered. Timing:
“It took almost three weeks.. .. I was concerned because I knew the amnio had to happen at a certain time and that if we had to make any decisions regarding the pregnancy that had to happen at a certain time.”
“I was already at 19 weeks, so I wanted to do it all fast, because if you did want to abort or anything, god forbid, they say you should do it before 22 weeks, so it was kind of like I had maybe a week or two, not even.”
“You feel like it is ticking. It’s like, everything is just building your anxiety.”
“I found out early enough that I’m able to have the two week wait [for NIPT results]. I’m still able to possibly have an amnio if I need it.”
Accuracy:
“Chance of not getting a result from the NIPT. .. to go through the test and to not actually have anything, you know time is ticking, so just making sure that we are going to get a reasonably good answer in a good amount of time was important.”
“If it comes back negative, you’re pretty much fine not to worry about it because they are very accurate tests.”
Timing:
The wait for results was typically described as very stressful, as the “deadline” for confirmatory testing and termination loomed. The idea of a deadline refers to the gestational age after which confirmatory invasive testing and pregnancy termination are no longer available. Women considering termination discussed perceptions of deadlines to make decisions about further testing or termination, describing the process of prenatal testing as a race against the clock. Women made frequent references to time pressures.
Accuracy:
The possibility of an inconclusive result was stressful for some women. Whereas women described a high confidence in negative NIPT results.
Farrell, et al., 2014, USA [19] N = 58 women in 6 focus groups, among them n = 10 had NIPT; only statements of women who clearly were recorded after NIPT are considered. Improved accuracy without risk:
One woman who had NIPT commented on how she perceived the value of NIPT in her prenatal care: “In my mind, it was just as well as diagnostic. I know it’s not. I know there is still a risk but in my mind, it made me feel better that 99% is good enough for me. If there is a 1% chance of something happening, then it’s meant to happen but 99%, I could at least breathe a little easier”
Identification of Fetal sex:
“That is another reason why we chose to do it because we wanted to know the sex of the baby. So I knew 5 weeks before I would have known from the ultrasound and some people (asked), ‘How do you know already?’”
The values and opinions expressed about NIPT by women who have personal experience with this technology are inconsistent with the way it is has typically been implemented in Ontario so far. A revision of the current policy should consider this evidence that women value early access to accurate tests without associated risks of miscarriage when considering how and when NIPT should be implemented into the prenatal testing care pathway.