Table 4.
Patient quotes
Theme | Participant | Illustrative quotations |
Patient theme 1: ‘vulnerability’ | UK patient 7 | ‘Because if someone’s offering me something and they, they say, well, it could work but it might not work, you cling on to the it could work. So, yeah, I'd probably still go ahead with it. But, you know, looking back now, it [evidence of effectiveness] does matter. But, you know, it doesn't make a difference when you’re, kind of, in the flows of it and there were lots of emotions flying around.’ |
Australia patient 11 | ‘If a doctor wants to offer some hope because they genuinely think that might work for you, wonderful, but I don’t think you can give people false hope because it will make the doctor feel better. You know, if a doctor, there’s no point doing it just to make the doctor feel better about giving a patient hope. They’ve got to truly believe it would actually work.’ | |
Patient theme 2: ‘power of the trusted professional opinion’ | Australia patient 3 | ‘And he said that’s got nothing to do with it, you’re just throwing money down the drain. You might as well just stop [dehydroepiandrosterone], and it was really blunt, and I did actually just stop. And then he said, [clinician quotes study regarding melatonin]. And he said, you’re wasting your money on that too. And I said, okay terrific, so I stopped both of them [DHEA and melatonin], which was fine, I suppose it saved me some money.’ |
UK patient 2 | ‘I thought that was just standard, to be honest. I didn’t realise that [time-lapse imaging] was an option. I mean, it came up, sort of, itemised on our bill so maybe I should’ve guessed from that that I could’ve taken it off.’ | |
UK patient 5 | ‘…I think it’s a bewildering, overwhelming world of stuff that lay people wouldn’t necessarily understand. And yes, it doesn’t seem fair that they include them [add-ons] as standard when people can't make the active choice, based on research, whether to go ahead or not.’ | |
Patient theme 3: ‘the evidence doesn’t apply to me’ | Australia patient 5 | ’So I think a lot of these, even the ERA test, the endometrial scratching, a lot of them are actually not proven to guarantee success. It’s just, I think because everybody’s different, everybody responds differently to treatment, I don’t think there’s ever going to be a definite answer, scientifically proven answer, for every single person.’ |
Patient theme 4: ‘acceptability of add-on’ | Australia patient 6 | ‘I also looked at the dangers of PGT testing. So, let’s say wrong results come back. And it was only quite low, so I was okay with that. I also looked at the risk of it being, like, what if it will harm the embryo unnecessarily and actually make the embryo unusable? But I think the risk of that is also quite low, so I was comfortable with that.’ |
UK patient 6 | ‘Cost was a massive thing for us. We ended up re-mortgaging our house to pay for our treatment…’ | |
Patient theme 5: ‘role of previous experience’ | Australia patient 13 | ‘But that said, one thing that did work really well for us, which was not noted down, was, a song called [name]. We played that before we went to the clinic, and that worked for our first daughter. And then the second time around… Of course, the same cocktail of different, different combinations. We also played that song again on the way on the way to the insemination clinic, and it worked two times [laughter]. For our friends, we said, we know you don’t like this music at all, but put this song on on the way to the IVF clinic, and see if it works, and it did. Three for three, scientifically proven [laughing]. You should play this. I’m just throwing it out there, so there’s… That’s three for three.’ |
ERA, endometrial receptivity array; IVF, in vitro fertilisation; PGT, pre-implantation genetic testing.