Final Attributes | Lay Terminology | Key Quotations from Qualitative Data | Suggested Labels of Possible Levels |
---|---|---|---|
1) Accuracy of Test | How accurate is the test in predicting rheumatoid arthritis | “I guess I want to know how accurate the test is, and if there is any chance that you could maybe be told like oh, there is a very good chance of you getting it, but maybe finding out later that that actually wasn’t true.” – First-degree relative “Because if you don’t get IgA [rheumatoid factor], for example, up to 50%, first degree relatives would be positive and I doubt all those are going to get arthritis, so.” - Rheumatologist | • High • Medium • Low |
2) Certainty in Estimates | How strong is the evidence for the test and preventive treatments | “Whether there was enough evidence to show that that treatment actually has a chance of preventing.” – Patient “Is there any data saying that coming from a high risk situation, what is the reduction?” – Rheumatologist | • Moderate • Limited • Very limited |
3) Method of Administration | Whether it is an infusion, injection, tablet. | “You know, I went to Europe last year with my wife. We were gone for, you know, half a year. Now if I wasn’t able to do that because I had to go to a specific doctor twice a week to get this thing, no thanks. I’m good.” – First-degree relative | • Infusion • Injection • Tablet |
4) Risk of RA and Risk Reduction with Treatment | The risk of developing rheumatoid arthritis without vs. with treatment | “Me personally, never [would consider testing]. Unless it’s 100% positive. Just with the test turn out.” - Patient “[I would consider testing] if there were perhaps a treatment that were extremely preventive and very effective at lessening the risk of developing such a disease.” – First-degree relative | • High • Medium • Low |
5) Risk and Seriousness of Side Effect | The risk of a side effect from treatment | “And I’ve had side effects with - I had a heart attack. I had my kidneys at stage - just the stage before. I needed to have dialysis, so. You know, there is side effects that you get that you have to watch out for.” - Patient “Especially because of watching my mom with prednisone, if there’s anything that increase the mental risk that would be like huge for me.” - First-degree relative | • Major irreversible; minor reversible • Major reversible; minor reversible • Minor reversible |
6) Who Recommends | Whether it is a health care professional, patient, or relative who recommends it | “[If I] learn that I had a high risk of developing RA, I would probably talk about it to people and then that is why I came up with who recommends it being important. And I think I would have to hear it from at least two sources to act on it,” – First-degree relative | • Health care professional • Patient • Relative |
7) Opinion of Health Care Professional | Whether a health care professional or patient supports/wants to take test and/or preventive treatment | “I think that I also have a lot of trust at this point in what health care professionals say. And a lot of my own opinions, and ultimately in the end, like it would be my own opinion, but I just think a lot of my own opinion would come from what the doctor said” - First-degree relative | • Health care professional doesn’t prefer • Health care professional is neutral • Health care professional prefers |