Table 3 Thematic Framework for “Preventing Rheumatoid Arthritis”

Patients

“Because it [RA treatment] is going to stop your pain when you take it anyways, why would you want to take that before if it has a lot of risk involved?”

“How the treatment affects or it works, down to a cellular level. The methods and results of testing. All possible side effects, short-term, long-term, and complementary lifestyle choices.”^a

“If we don’t know the cause [of RA], everything is suspect that we do. You know? And especially all the treatments”^a

“People should know why they should take the drugs because, for people like me who were in denial or just thought I would eat better and exercise and do yoga and whatnot I’d be fine and I don’t need all these drugs.”

“Your whole generation just looks at so many different options.”^a

First Degree Relatives

“From where it would be coming from, Dr.--- was like, ‘Hey, you know, there’s this treatment. You know, I know how badly it effects your mother. I think that you are possibly at risk for having it,’ and he suggested it to me, I would definitely take a look at it.”^b

“There would always be that little bit in the back of my mind that would go, ‘Okay, how far is the treatment going to be advanced by the time that I get there.’ You know, like in another 15, 20 years of medical science how much is the treatment for people with it going to be advanced?”^b

“And I’ve heard theories, everything from it [RA] skips generations to it’s immediate, to you know it only affects the women in one side of the family. I’ve heard a whole bunch of different crazy different things.”^b

“So let’s say that it’s a 60% chance that it’s absolutely going to prevent rheumatoid arthritis later in my life, and there’s a herbal treatment which is, like, 55%, 50%. That massively changes what my personal treatment plan is.”^b

Rheumatologists

“But from our point of view is it safe to say though that we, too, if there was good evidence that normalizing endosmosis, or that weight loss or smoking cessation reduces [RA], we would be more at ease with that sort of intervention than an intervention that involves medications with toxicity?”^b

“I think that a really, really strong, good solid scientific placebo control or analyzed control, let’s do it, I’ll push for it. But before that it is do no harm and that is how I approach my patient.”^a

“I think that if you’re able to profile rheumatoid as to those patients who have really terrible diseases, you know, you can get it under control … and you were able to give something really, I would feel that those patients that I would be willing to do [preventive treatment].”^a

“Is there a marketing approach that would change actual behavior or compliance in all that sort of thing. I think that’s one thing medicine really hasn’t -- you know, drug companies do it all the time, but that is to sell drugs to us not to the patient”^b

“Patients want a cure, and patients want a cure naturally, right? And natural is perceived as being with no risk, which is not always true.”