Table 2

Tools of reassurance

GCr19	“…generally, the focus is on reassurance, which is yes, different to the other prenatal testing that we are doing.”
CG18	“…to have an invasive test where the miscarriage risk and the recurrence risk are the same, is such a difficult decision for people to make.”
GCr01	“I mean obviously it depends on their moral belief…their morals, their values, their religious beliefs, all different reasons to whether they would want invasive, and you know whether they would consider termination.”
GCr20	“Some couples will choose the NIPD route because it’s a non-invasive test and they don’t want to put a pregnancy at risk from a needle going in from an invasive test. It means that they… but they need to pay for it, so it’s that kind of balance.”
CG10	“They are reassured that we’ve applied the best of our knowledge and the best of genetic testing technologies to their situation and given them a figure.”
GCr07	“…we could open up other options of testing for them. For example, will they then meet the criteria for NIPD which, for some people, would be huge. You know that would be so beneficial if they could access that rather than having an invasive procedure, especially if it’s someone who is perhaps later in maternal age, pregnancies are becoming more precious, or again if there are religious issues or just personal feelings around termination.”
CG18	“It would make a big difference to the people that do have it [PREGCARE] and you would avoid miscarriages from invasive procedures for certain, which in itself is a huge thing and the cost of having a CVS is significant as well. There are so many good things about avoiding an invasive test.”
CG08	“Some of them would be that there’s pretty much 0% chance risk of it happening again and so then we’ve got to be bold and say to people, ‘Actually, you don’t need prenatal’. That’s the whole point of it, it’s not to put people through that difficult process. Yes, you’ve got to then be bold and say, ‘You don’t need it’.”
CG08	“If at the point of a child being diagnosed, if you then get accurate recurrence figures in the next few months afterwards, then it may be that they don’t need another appointment and another appointment and maybe they don’t get offered prenatal diagnosis.”
CG13	“The other thing is the acceptability, you know, if patients will find it acceptable to have so many samples taken. They will have to be really motivated for that otherwise they just might give up. They sometimes don’t turn up for an appointment when we just have to take a blood sample.”
GCr20	“It was so interesting because when I listed the samples that were needed, I thought that might put them off or I thought that they might worry about that, but they absolutely didn’t. They were quite happy to provide anything that would help to work things through.”
CG08	“If it’s high risk but not quantifiable, then you’re back into the fudge figure, so I suppose really, you’d just be saying to the people that, ‘We’re almost back to where we started, that there is a risk, but we don’t know exactly how high…’.”
CG14	“I’m doing it [giving generic recurrence risk] at the same time as the diagnosis, to be fair, usually they're focused on the diagnosis…So, actually, the recurrence risk in that situation is secondary…”
GCr19	“The logistics of the sort of urgent ad hoc contact with patients and midwives and FMUs and just the logistics of doing all of that and often doing it quite quickly if necessary…most often they come in around 10 or 11 weeks and you do have to get things, you know, obviously done quickly and that means that patients are potentially having less time to make those decisions as well.”
CG11	“So, you want to get it done [PREGCARE] before they’re planning their next pregnancy but the last thing you want to do is bring additional trauma to a couple who may well be in the midst of very deep grieving.”
CG10	“…a couple would need to understand all the ins and outs of those seven possible results and the negatives of the path that they are embarking down and the potential parent of origin issue. There is a lot of complex pre-test counselling there to be done.”