Table 2 Illustrative quotes for perceptions of mental health & screening for youth with SLE/MCTD

Mental health

“When you feel good in your mind and you have confidence and you’re feeling able to do things, and then you can physically do it, it just makes you a happier… Mind, body, soul kind of thing…it all needs to jive. You could have a great body image, but maybe you’re depressed about something else in your life and that kind of makes your body not feel so great and then that’s all very connected.” Parent

“So having a good social life, that’s pretty important to be healthy. And even though maybe I’m not physically–like physically the best, like having good social and mental could make up for that…” 16 y/o male

“I think your mind has a lot to do with it…having a lot of your, so to speak, mental health taken care of, actually can help improve your physical health, as well. It’s equally important.” 19 y/o female

“Essentially with lupus, a lot of the–maybe even the original time, the lupus attack and the damage done to my kidneys was based on stress possibly. So that’s a big part of making sure I keep healthy and not being stressed out or letting things hang over my head.” 18 y/o male

Screening in the Rheumatology Setting

“It was helpful for me to realize, because sometimes I’ll think, oh I’m just feeling up or down, like happy or sad. But really asking, do you feel scared, do you feel anxious, do you feel like this kind of sad, that kind of sad, that was interesting. And that sort of made me think about it a little be more.” 18 y/o female

“It was kind of almost reassuring knowing I could answer all those questions without having to say I’m stressed out or anything like that, and that everything was going good and the satisfaction with what was going on.” 18 y/o male

“They were easy questions, pretty flat out, but I don’t know if I exactly told the truth, but I don’t know.” 14 y/o female

“I feel like it was personalized, but not in a bad way, the kind of way that it was like, do they see something in me that someone else isn’t catching, or is it–like is it written across my face that I’m worried. I didn’t feel attacked. I just felt like I wasn’t doing as good of a job as I thought I was at hiding it.” 19 year-old female