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Table 2 Thematic Framework for “Living with Rheumatoid Arthritis”

From: Perspectives of patients, first-degree relatives and rheumatologists on preventive treatments for rheumatoid arthritis: a qualitative analysis

  Living with Rheumatoid Arthritis Being Proactive about My Health Wanting a Better Quality of Life Trying to Avoid the Side Effects of Medication Having Concerns about the Impact of the Test
Patient “I was just devastated, I couldn’t even, for an afternoon get dressed, couldn’t pull up the zipper on my pants, and I just lost so much weight.”b “You want to do something about it [RA]. It’s not just a matter of kind of thinking you’re going to get over it”a “[Treatment would] minimize sort of like the long term impact of maybe like hunching and succumbing to the pain. So that was really good.”b “And of course the medication is affecting all the other things, the liver, the kidneys. Your skin, your hair, like everything. Eyes.”b “And you could have some kind of decision tree or flow chart. Okay, so I’ve got this positive marker, now what?”b
First Degree Relative “She [family member] had a life and then once the disease came and took it from her, she didn’t [anything] anymore. She couldn’t do things.”b “If there were perhaps a treatment that were extremely preventive and very effective at lessening the risk of developing such a disease, I absolutely would take the test because that to me leads to something that is preventive. That leaves me being able to take some action”a “If that was a risk for the medication, it’s also a risk for the RA. You’re almost guaranteed to get serious infections and TB is completely likely. So would I rather get those now when I’m strong enough and healthy enough to fight them” “Especially because of watching my mom with prednisone, if there’s anything that increase the mental risk, that would be like huge for me.”a “And for me adding any kind of anxiety to it, not because [a test result] necessarily jars me into a realism that I’m not comfortable with, but because I don’t think it adds anything.”b
Rheumatologist   “They [first degree relatives] want to know [about RA risk] because they think that they can prevent disease in themselves.”    “Well, if I know I’m going to have Lupus then my insurance goes into the toilet, you know, and I don’t want that, so I don’t want to know. I don’t want my family to know.”b
  1. a and b next to quotes indicate moderate and high importance/representativeness, respectively