Themes and illustrative quotes identified in inflammatory arthritis participants regarding DMARD safety concerns.
| Theme | Illustrative Quote |
|---|---|
| Patients and clinicians view side effects differently; “nuisance” side effects persist and can have a substantial cumulative effect and often lead to patient-initiated dose reductions and discontinuation | “I feel like I can’t think anymore, and that really affects work and that’s my biggest problem. I can push through the pain and I can sometimes push through the fatigue, but I can’t think clearly. I just can’t do my job, and that’s been the biggest struggle for me.” — Female, USA “When you do bring up a concern like ‘Well, I’ve got really bad headaches’…And [MD says] ‘Oh, well, that’s a hard problem to deal with.’ It gets kind of sloughed off.” — Female, Canada “Started out with nausea, and for a long time it wasn’t too bad. But the last 3 years, I just felt nauseated 24/7, even with the injection — nausea, headache, digestive issues. And I just took myself off it…and I feel a whole heck of a lot better.” — Female, Canada |
| Patients have difficulty sorting out side effects from other factors | “I thought it can’t be the medication. I didn’t eat properly today. I’ve had 13 cups of coffee. I need to go home and get some food in me…and all kinds of reasons for what was happening, other than [the medication]. [Long pause] It was the medication.” — Female, Canada “Honestly, sometimes I don’t think about it… I would not have said to you, ‘Oh, I have lost my hair.’ But you know what? I’m cleaning out my drain… I’m cleaning a lot of hair out of my drain. But I wouldn’t think to report it.” — Female, USA |
| Different DMARD elicit different safety concerns | “[I worry about] bad things that can happen in you that you can’t see.” —Male, Canada “…and then [with] going through all the side effects, but you want me to take this forever? You know, what, I’m 26 and I’m supposed to just take this forever now even though you’ve told me the effects it’s going to have [on] my liver, etc.? …I am not satisfied with just taking the medications that they’re giving me for however long. I need to know there’s some sort of end date.” — Female, Australia |
| Concerns are influenced by disease and medication experiences, and individual and social factors | “When I first was diagnosed, I didn’t think I was going to live as long as I did. That’s how bad I felt. So, the side effects…just have to step aside right now. Because I look at the positive part of it. I can walk 4 blocks and it don’t bother me.” — Female, USA “I’m definitely worried about the longterm effects… If I wanted to have a family, how would I do that? …And the doctors always saying that that’s going to be fine and manageable. And I know that obviously other people do it. …But it is something that I think about.” — Female, Australia |
DMARD: disease-modifying antirheumatic drug.