Table 4 Theme 2: Ethical and psychological concerns

1

“I would also say that there are not maybe now but, in the future, there will be insurance implications of knowing potentially that you have a risk of developing a disease like rheumatoid which is associated with morbidity and increased health costs and an insurance company would definitely be very keen to know that information”. PPN 01, Rheumatologist

2

“They could say, ‘We know that you’re going to get RA and therefore, we’re not going to insure you, sorry. We’re not going to give you health insurance.‘ There are some unintended consequences from that point of view because actually having a diagnosis or a pre-diagnosis may have implications on all that sort of thing.” PPN 07, GP.

3

“There are other issues around things like mortgage applications, life insurance, jobs, that are they going to have to declare something that they don’t have currently, but they may be at risk of developing, which will make their life more difficult, make it harder to get loans, make it harder for them to buy a house or, you know, work in the area they want to work in as well.” PPN 09, GP.

4

“In asymptomatic people, I guess it can create a certain amount of anxiety and concern for the patient”. PPN 03, Rheumatology clinical nurse specialist

5

“It causes a lot of anxiety and stress for these patients as well, to be told that they could have positive RA.” PPN 15, GP

6

“We’ve just got to remember that these are predictive risks. I would imagine there will be some sort of threshold but it’s not going to be saying they will get rheumatoid arthritis.” PPN 07, GP

7

“So, I suppose the main issue is that they are predictive. They’re not guaranteed. So, we’re saying to someone, ‘You have a risk of so much of developing this condition in the future, but we can’t guarantee that you actually are going to get it’.” PPN 19, Rheumatologist.

8

“Even if you’ve got predictive tests, I don’t think you could predict how severe, you know, each individual patient was going to be just put them in high risk you don’t know if they might develop a more aggressive disease. I don’t think you can really predict onset of how bad it can be you know.” It’s tricky. PPN 05, Rheumatology clinical nurse specialist

9

“So, my understanding of those tests, particularly the blood tests, they’re not very specific.” PPN 16, GP.

10

“You can get positive rheumatoid factors, and nothing comes of it. Are we then putting patients at risk of going on treatments and having steroids? It wouldn’t have been needed if we’d have just waited.” PPN 04, Rheumatology clinical nurse specialist